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Introductory Notes

Introductory Notes

(Note: Although we've both been dealing with this cancer in sense, Helena will tell the story from her viewpoint.)

Since I saved nearly every posting I've submitted to CompuServe's Cancer Forum during the early 1990's, several people have encouraged me to share these experiences with a wider audience. We think "the immediate Net" should be sufficient...

I have been dealing with a cancer called adenoid cystic carcinoma. It's a salivary gland cancer that usually originates in a gland that secretes something; usually the adenoids (hence its name). In my case, the "culprit" was the gland that secretes ear wax.

No, I'm not a doctor; and can't even begin to think of playing one on TV (or anywhere else). However, anyone touched by cancer eventually learns a subset of the vast medical vocabulary that sounds impressive to the "average" person. But since I'm in the business of making things easier for people to understand, I'll try to keep the jargon to a minimum.

It takes time to dig through 20-plus years of memories and transcribe them into a format suitable for the average reader. Most of the material in the first 6 parts comes from memory. (However, I've recently unearthed some old reports; and some of the information I've discovered has been incorporated into these latest revisions.) On-line recollections begin with Part 7 - this may explain any change in tone/approach. As you can imagine, this process is not only physically taxing, but also emotionally draining.

To ease matters for all of us, the story has been broken into parts. We'll indicate the date each part was written (or modified) and insert NEW labels where/when we've inserted brand-new information.

We hope you find our story informative, instructive - and maybe even inspirational.

Modified Date
2000-03-04
Three Signs (1969 - 1977)

Three Signs (1969 - 1977)

Back in the days when when young adults were singing about the "dawning of the Age of Aquarius" and astrology inspired some curiosity, a group of high school students were comparing sun signs. I mentioned that since my birthday was June 27, I was born under the sign of Cancer. One young man looked at me in mock sorrow and said, "Oh, so sorry to hear you'll be dying in a few years." A first sign?

Another high school feature was language lab. Once a week, the class would gather in a room containing tape recorders and headphones. For the next half-hour, we'd individually listen to tapes of native speakers and attempt to replicate dialects and dialogue. Although I enjoyed the sessions, they were painful nonetheless. The right earpiece of the headphones painfully irritated my ear. I always thought this happened because the headphone rubbed against the earpiece of my glasses in an unusual way. A second sign?

After graduating high school, I went on to college and joined the news staff of the campus radio station for my last two years. I had a painful reunion with the same sort of headphones I endured in high school. The pain had not diminished, no matter how long or brief the newscast. A third sign?

Meanwhile, I learned to live with the pain...

Modified Date
2000-03-04
Just Look in the Phone Book (1977 - 1979)

Just Look in the Phone Book (1977 - 1979)

After graduating from college, I got my first "real" job; a staff reporter for a small weekly newspaper. A little over a month after beginning that job, I met the man I would eventually marry - on a blind date on Christmas Eve, 1977. Some 10 weeks after our first date, Ken proposed and I accepted. And then my right ear decided to inform me that it didn't need headphones to express its pain.

On top of that, I began to notice a pimple at the entrance to the ear canal. Unlike an average pimple, however, this thing wouldn't respond to squeezing. So, one evening while I took my younger sister to the family doctor for an appointment, I asked the doctor about my "pimple." He glanced at it, assured me it was nothing to worry about, and suggested regularly soaking it with hot water. Although I followed his advice, the pimple failed to diminish, and neither did the pain. However, I became quite skilled at covering up my discomfort in public - and, perhaps due to the din of wedding preparations, I didn't seem to be in as much pain anyway.

Ken and I were married in March, 1979 and settled in the Leonardo section of Middletown, NJ (a few miles from Sandy Hook). We thought we'd conquered the pain - until a few months after our wedding. Ken was determined to find out the source of my discomfort. Since his mother was a speech therapist, he inquired about doctors we might be able to visit. He was told, "there are good ear doctors in Red Bank." So, we took out the trusty phone directory and looked for ear doctors in Red Bank, which was only 20 minutes from our house. We took an afternoon off from work and went to see Dr. Sullivan.

Dr. Sullivan appeared to be a gentle young doctor, but his first injection of anesthesia made me feel anything but - I thought my screams could be heard throughout the city. But once the medication took effect, the doctor could poke and probe to his heart's content without so much as a twinge from me. I was sent off with a perscription for antibiotics and a follow-up appointment. Ken and I went home in hopes of getting changed and traveling to a nice restaurant for dinner before a square dance we planned to attend that evening.

Unfortunately, we didn't count on the effects of the anesthesia wearing off. As the medication wore off, I was in even more pain that I felt when I entered the doctor's office. As soon as we pulled the car into the driveway, I ran up to the bedroom and proceeded to do little more than scream in pain for the next hour. Poor Ken didn't know what to do with me! Of course, by the time I finally stopped screaming, it was too late to consider dining on anything more than fast food, but at least we were able to enjoy a nice evening of dancing.

Dr. Sullivan tried feeding me an assortment of antibiotics in hopes that my pimple would dissolve on its own. Unfortunately, it proved resistant to anything I was given. One fine Saturday morning, I visited Dr. Sullivan one more time. He called in the senior partner in the practice to review my pimple and described his plan to excise it. The senior doctor replied, "The pathology should be very interesting." And so we began to make arrangements for my first operation (I never even had my tonsils out before!). My back was getting an unintentional massage as Ken's arm shook behind me.

We walked out of Dr. Sullivan's office dazed and numb. Now what do we do??? Well, we'd been entertaining thoughts of getting a new car; but the order cycles for Chevy Citations were fairly long at that time. However, Ken told me he'd been seeing ads in the local papers hyping, "We have x Citations on our lot!" So, in an effort to relax, we headed for the local Chevy dealer. There were 6 Citations on the lot - and 2 of them had almost all the options we wanted. You guessed it - we promptly made a deposit on a blue 4-door hatchback. (For the record, that car lasted 5 years and was retired in 1984 with 131,500 miles.)

Surgery was set for Thursday, August 30, 1979 at Riverview Hospital in Red Bank, only 15 minutes from home. I was assured that by having the biopsy done that day, I could return to work right after Labor Day. Wrong! Obviously, whatever was ailing me had taken its toll on my stamina. I didn't get back to work (in New York City) until the following Friday - and regretted it shortly after arriving at my desk.

The pathology came back a few days later. I was told I had "a rare, benign growth."

Modified Date
2000-03-04
Opening the Pandora's Box (Spring - Fall, 1981)

Opening the Pandora's Box (Spring - Fall, 1981)

Life went on normally for the next year or so; save for one minor scare that turned out to be an infection. But then came the spring of 1981. Another lump appeared and the pains returned. I returned to Dr. Sullivan's office. He gave me some more medicine to take in hopes that all I had was another "rare, benign growth." However, he also pointed out that "you're not supposed to get two of these in the same ear." Hmm...

After a week's vacation and no lessening of pain, we decided to schedule another biopsy. Yes, it was coming up to Labor Day weekend again - but this time, things would be different! I agreed to surgery the Wednesday before Labor Day, but insisted on staying in the hospital an extra day. This time, Dr. Sullivan arranged for the pathology to be sent to the Armed Forces Medical Center For Pathology in Washington, DC to be reviewed by a specialist he once trained under.

The procedure took place at Riverview on September 2, 1981. Things were much different this time! I was actually quite coherent upon awakening. I even attempted breakfast, albeit unsuccessfully. But I certainly had an appetite for lunch and dinner - and both managed to stay down. This time I was able to return to work right after Labor Day without ill effects. I was told the preliminary pathology from Riverview was negative - but the folks in the lab were happy someone else was going to review my lump.

Two weeks later, I was back in Dr. Sullivan's office awaiting the report from Washington. The news wasn't good - and the lump was being sent to Thomas Jefferson Hospital in Philadelphia for yet another opinion. Meanwhile, Dr. Sullivan arranged an appointment for me to see Dr. Biller at Mr. Sinai Hospital in New York City. He told me there were two reasons for this referral: "One, he's a top doctor in the field. Two, he's a human being." After all we hear about insensitive doctors, I felt some reassurance.

But Dr. Sullivan looked scared, as if he'd just opened a Pandora's Box without knowing what was going to come out next. There was no way of telling whether the initial biopsy had been diagnosed incorrectly, he explained. "I don't know what I can say to make it sound better," he said. Heck, I knew there was nothing to say...

However, there was the matter of telling Ken - and everyone else. I paid my fee for the visit and made Ken get into the car without turning on the engine before breaking the news. His first reaction after the initial shock? "No, we're not buying a new car."

We visited Dr. Biller in early October, armed with a letter of introduction from Dr. Sullivan and a bunch of reports. Dr. Biller seemed to be the personable fellow I imagined (per Dr. Sullivan's "hype"). After reviewing everything I brought and looking me over, he rattled off a bunch of sentences that probably amounted to a diagnosis - none of which made much sense at the time. The only thing that made any sense to me was the comment that half my face may become paralyzed. At that point, I asked if he wouldn't mind repeating this to my husband, who was out in the waiting room. "No problem," the doctor said. "Bring him in." Ken came in, the doctor repeated everything he told me - and it made even less sense to him. (So much for witnesses!) All we knew was there would be major surgery, followed by a few weeks of radiation, and a paralyzed face.

We left Dr. Biller's office even more confused than ever. This required some good stiff drinks, though neither of us indulged in alcohol very much. (Our interest in wine was many years away!) The only thing I could think of was the rum punch in the funny statues at Benihana - and that's where we went for dinner. After all, we promised ourselves we weren't buying a new car.

Back home, I had one more visit with Dr. Sullivan, who attempted to explain what might happen. He promised to be around to provide progress reports to Ken as best he could. We were told to expect the surgery to last at least 3 to 4 hours.

Modified Date
2000-03-04
But the Puzzle's Not Finished! (November, 1981)

But the Puzzle's Not Finished! (November, 1981)

I was set to enter Mt. Sinai on November 16, 1981. Surgery was scheduled for the 18th. It felt strange to be back there - I spent 8 days in the Children's section when I was 10; undergoing a variety of (unrelated) tests not worth discussing here. Impressively enough, the Admissions Office could access my old file, different name and all!

I was admitted late Monday evening and placed in a tiny room in the Guggenheim Pavilion. I was examined by one of the residents - a petite woman with an iron grip - who assured me I'd be moved the next day to "our place."

That turned out to be the Hausman Pavilion; which seemed to be "home" to Ear, Nose & Throat patients - many of them Dr. Biller's, I soon learned. Hausman was quite a primitive place. You needed a nurse? Just ring the bell - the tiny old-fashioned variety tied to the bed! (The more familiar buzzers were in the process of being installed during my stay.) I was placed in a room with 5 other beds; two of them occupied by patients with throat or vocal chord problems.

I was given a hearing test that first morning. The afternoon featured a parade of doctors all offering their personal versions of what was going to happen to me the next day - the nerve specialist, the anesthesist, etc. Nothing made much of an impact until Dr. Ross came over. Dr. Ross, a chief resident, was a young man with no bedside manner. He proceeded to go over the gory details of the next day - and I mean gory! At that point, it finally dawned upon us (Ken and my mother had arrived by then) that I would lose an ear. Ken broke down, and I was numb - heck, what was I going to do about it now? The words just waved over us.

Finally, visiting hours were over, and Ken and Mom left me alone. About a half-hour later, I had surprise visitors - Pete & Kathy LaMaster from our square dance club! Seems they had driven a friend to the hospital and managed to figure out where I was. (Hausman's sole virtue was that it had no security whatsoever - no one stopped anyone from coming in.) We had a pleasant visit, then they all left and it was just me and the tiny bedside TV.

Around 10 p.m. the nurse came over, and asked that now infamous question, "Do you know what's going to happen tomorrow?" Yes - I've only heard about it from at least a dozen people by now! "But you haven't heard from a nurse yet," she insisted. I asked for a sleeping pill.

The gang began to assemble for The Main Event early the next morning. Ken took my glasses and jewelry, the medical staff came in to do their things. Of course, shortly after I got that shot designed to begin making one drowsy, I was handed "one more" consent form to sign! My signature must've looked interesting by then - especially since I had to hold the paper close to my nose in order to see the signature line.

And then I was wheeled along those seemingly endless underground hospital corridors to the Operating Room (OR). I slid onto the table and felt the blood pressure cuff and EKG probes being attached. I began to drift off - and there I stayed for the next 6-and-a-half hours.

What did they do to me during all that time? As I understand it... (Remember, I'm not a doctor!)

  • They removed the tumor, of course. It had settled on the nerve that controls the movement along the right side of my face. The 7th facial nerve was cut and a piece of a nearby nerve was grafted onto it. I was told this grafting was something fairly new.
  • They removed my right ear and closed up its ear canal. The ear was "replaced" by a chunk of skin from my right shoulder blade that was grafted on. The skin below the shoulder blade was "stretched" over the section that was taken away - a novel means of replacement, I suppose.
  • Since they happened to be in the neighborhood, my right parotid gland and mastoid bone were also "evicted." Among the "technical" terms used to summarize this operation were "parotidectomy" and "mastoidectomy."

While all this was taking place, our families had taken over the lounge back at Hausman - Ken, my mother, brother and sister, and Ken's parents. Fortunately, they had something else (besides the obvious!) to keep them occupied - a jigsaw puzzle. Several months earlier, Ken had received a large puzzle from his sister as a birthday present. It was titled "Decisions, Decisions" and pictured every sinful dessert you could imagine - cream puffs, eclairs, etc. I used to refer to it as "Dieter's Delight." When this operation was scheduled, we agreed that this would be the ideal time to work on the puzzle.

It seems that everyone in the lounge managed to get at least a few pieces assembled during the course of the surgery. Of course, there was no shortage of trepidation along the way - especially since no one ever did hear from Dr. Sullivan. (He later apologized; noting that it was all he could do to find the OR, let alone Hausman.) The time dragged on, trips to the bathroom were delayed (That would surely be the moment when The Word would come that surgery was completed!) - so work on the puzzle continued.

Finally, the call everyone awaited came - and Ken's first reaction was, "But the puzzle's not finished!" He estimated that another 30 minutes worth of effort would've completed the picture. Human nature is wonderful, isn't it?

Then came the long-delayed mad dash to the bathroom. And returning to the lounge to discover that the puzzle had been taken apart and put away. (The two of us eventually completed the puzzle - one year later while watching Election Night returns on TV.) Then came the emotional release of tears. Someone asked a nurse standing nearby what the problem was. She responded, "Oh, his wife just came out of 6 hours of surgery."

A short time later, one of the more pleasant residents came over and asked Ken if he'd like to visit me. He offered some useful advice: "Imagine what you think she looks like - now think of it being 10 times worse," he said. "Now go see her."

And with that, Ken and my mother came to see me in Intensive Care. I had awakened in the fog normally associated with these sorts of things - and having no glasses simply made matters worse. But when the nurse said, "There's someone who'd like to see you - is that OK?" I knew exactly what she meant. (Whew - I was still in command of my mental faculties!) Ken came over and was very careful to stay on my left side. Since he hates the sight of blood, I knew he'd refrain from looking at the other side. So, to him, I looked perfectly fine. Later, my mother (who's had nurse's training), and my sister (who was in nursing school at the time) had the fun of seeing the results of the "work." I think they were impressed.

I remained in Intensive Care overnight; where I could moan and groan to my heart's content, I suppose. I was shipped back to Hausman the next day, and actually got to spend some time in a "real" chair. That evening, Ken decided to visit our Advanced square dance club on the way home to let folks know I had successfully made it through the surgery. He ended up dancing all night - and later admitted it was the best thing he could've done for himself.

By Saturday, enough tubes and drains had been removed to enable me to take my first short walk to the bathroom (with help from my sister). Although I was now forced to view my "new" face in the bathroom mirror, I tried not to think too much about what I looked like. Suffice it to say it wasn't pretty - my mouth was a 45-degree line across my face, and my "ear" was a lump of skin that resembled an elephant's ear. I also had a line of several dozen stitches from above my former ear, down the side of my head, ending somewhere above my collarbone. There was also a line of stitching across the right shoulder blade from which the graft was taken for my "elephant's ear."

Some basic functions were affected too: Because most of the right side of my face was paralyzed, eating and drinking became a little challenging. I drooled a lot. One of Ken's co-workers who experienced Bell's Palsy (which some people assume I have, at first glance, to this day) gave me valuable advice concerning the best way to accomplish this. Ken also marveled at another way the human body compensates itself: Since I couldn't close my eyes properly, the eyeball rolled up to create the same effect so I could sleep. On the other hand, my right eye teared uncontrollably (It sometimes still does). Because the skin graft taken from my shoulder blade affected the muscles in that area, I was given a basic exercise for my right arm, so I could regain full range of movement in the area: Standing at arm's length from a wall, get the fingers to "climb" up and down said wall.

Over the next week or so, there were pletny of things to aid my recovery. Lots of cards, plants and flowers arrived - including anthuriniums shipped via Fed Ex from my cousin in Hawaii (they lasted till 2/82!), and a tree that lasted over 10 years. I still have the artificial flowers from the Touche Ross Atlanta office! Ken kept me reasonably stocked with reading matter. (He also lost his fear of driving in New York City by driving to the hospital each day.) And the hospital staff kept giving me changes of scenery - a new room every few days. I didn't think that was intentional, but that's how it worked out.

I guess I must've recovered fairly quickly. Stitches were removed rapidly - no surprise to Ken or Dr. Sullivan (given my history of healing quickly from the earlier biopsies), but amazing to the Mt. Sinai staff. I began navigating the corridor with much more confidence. I even managed to impress Dr. Ross enough so he became more human. His final question to me before he left for Thanksgiving was intriguing: "Did you ever imagine you'd look this way?" Honestly, I didn't have an answer - simply because I never gave it much thought. Actually, I've gone through much of this experience "wearing blinders." This probably has both advantages and disadvantages...

Although I was given the opportunity to go home for Thanksgiving, I didn't feel comfortable with the idea of Ken driving into New York City and dealing with all the traffic that hectic Wednesday. So my discharge was arranged for the Sunday following the holiday.

I spent Thanksgiving in the hospital. I've since concluded that there are fewer circumstances more depressing than spending a holiday in the hospital, no matter how hard you try to get around it. The parents had sent food; and Ken, my mother, and I took over the lounge and had our holiday dinner that Thursday. The hospital's holiday tray proved to be my last edible meal until I was discharged. (My one visitor from work was "treated" to seeing me dining on an ice cream sandwich for dinner - the only thing Ken felt was worth smuggling out of the hospital cafeteria!)

Needless to say, I was more than a little hungry when I finally arrived home that Sunday afternoon! But after two weeks in the hospital, it was simply great to be home!

Modified Date
2000-03-04
Nothing Prepares You (December, 1981 - January, 1982)

Nothing Prepares You

Since I hadn't so much as heard of the internet back in 1981, there was really no place to turn for the types of support now available, either on-line or via in-person groups. While I've had no difficulty discussing my problem, many folks were probably uncomfortable with this. Although I left the hospital with all sorts of advice, I soon learned just how clueless I was about the impact of this operation.

Nothing prepares you for discovering your true physical abilities after major surgery.

First, there was an event that later became affectionately known as The Mall Test. The object of this 'game' was to determine my level of stamina - or, more appropriately, the lack thereof. We went to Monmouth Mall (Eatontown, NJ) - and discovered within an hour that I wasn't up for much walking. So much for that bright idea! I'm not sure I even bought anything!

However, nothing prepares you for the reaction of others when your face has been disfigured.

Somehow, Ken managed to come to terms with my "new look" fairly quickly. He told me that his "turning point" came while I was still in the hospital. He said he was strolling down a corridor one day (possibly in Hausman) and noticed a man with only one ear - and a crew cut! It was when he didn't feel grossed out over it, Ken told me, that he knew he could accept the way I now looked.

My second test came right on the heels of the first. The Jewish calendar played a mean trick on me and I had to go to services to say memorial prayers for my late father. However, while I could remain anonymous in the mall, the same couldn't be said in the synagogue. (Since Ken was enjoying the rabbi's "Intro to Judaism" class at the time, my situation wasn't a complete secret to the congregation.)

That evening proved to be among the lowest points of this ordeal. People who once sat next to us wouldn't even so much as say hello. Of course, I wasn't physically able to be my usual bouncy social self. Although the rabbi and his wife were kind to me, the damage was done. I promptly broke down as soon as we arrived home; and regular synagogue attendance has been challenging ever since.

My next public appearance was the Rutgers Promenaders square dance. This group proved to be incredibly supportive - looks didn't seem to matter. A few dancers had visited me while I was at Mt. Sinai, so some folks were prepared. I was warmly welcomed, even though it was obvious I wasn't going to dance that evening. I had hinted to the round dance leader, though, that I might be able to attempt something simple. He actually obliged, and I probably shocked more than a few people by trying - but I needed to know what I was capable of doing. And it proved to be just enough activity to send me back to the couch and my needlework for the rest of the night! But it did feel good to be able to dance again!

A few days later, the club held its annual Toys for Tots holiday dance. I was able to try a few more round dances. Then, late in the session, someone approached me and offered to split a square dance tip with me. I could dance the hash (first part) and she would dance the singing call (second part) with Ken. A square of dancers who were aware of my situation was set up for me in front of the caller (who obviously knew what was up). The caller managed to gracefully end the hash just as I was about to drop from exhaustion. I was on my way back to becoming "normal" again.

Although I was out of work on disability leave, I still had things to do at home. I tried to become acquainted with my first home computer (an Apple II) and my first software package (Visicalc). I also tried to sew my first square dance dress.

About a week before Xmas, it was time to face the next step - radiation therapy. Fortunately, I could go to Riverview for these treatments! The estimated duration of this segment kept increasing every time I discussed it with someone: First it was 5 weeks, then 5-7 weeks, then 7-9. It was beginning to get scary!

The Radiation Therapy group consisted of a pair of technicians with a wild sense of humor and 3 doctors - two kindly old men and a fellow we eventually code-named "The Young Jerk." (You'll see why shortly.) The apparatus being used to treat me resembled an old-fashioned Princess telephone receiver - you can imagine what it must've looked liked "dressed" for the holiday season in metallic garlands!

Nothing prepares you fully for the rigors of radiation.

After two sessions of measurements and marks all over my head, it was time to begin the routine - 15 minutes every weekday. The field of radiation extended from above my "ex-ear" to just above my breasts. Because I was about to return to work in New York, the staff was kind enough to adjust the appointment schedule so that I could have my treatments during the time they'd normally spend warming up the machine. This enabled Ken to speed his way up Route 35 to the last bus station along the line so I could catch the last rush hour bus to New York. (Fortunately, we never got stopped by a cop during all this time!) I usually arrived at my office between 10:15 and 10:30 a.m. to try and do some work. I left around 3:45 p.m. to catch a bus to Carteret (NJ) to meet Ken for the trip home (Ken's office was a mile from the bus stop.).

On Fridays, I went to work early in the morning and left by noon for treatment. This session was followed by blood tests, pictures (Gotta see what all this is doing to me!), and a visit with one of the doctors. The session with the doctor consisted of an examination (of course!) as well as an opportunity for Ken and me to ask any questions we might have about the process. This was usually a pleasant encounter with the older doctors, but very frustrating with "The Young Jerk." The younger fellow always seemed unprepared: He kept asking questions for which the answers were staring at him from the chart. All too often, he was near the door as one of us was about to ask a question. This did not leave us with good warm feelings! (Fortunately, I was promoted to yearly checkups once the older doctors retired and the younger one became the department chair. And years later, when I needed to visit his radiology group for a completely different exam, he actually remembered me: "I know you," he said by way of encouragement. "You're tough." Sheesh...)

One of the reasons I was advised not to work full-time during radiation was that these treatments are cumulative. That means the effects don't hit you at first. I felt pretty good during the first two weeks, but fatigue began to set in by Week 3. I heard that it was possible to get a week off when you've been hit with enough rads (units) - and I kept hoping for a break in time for the annual January Jubilee square dance weekend in Philadelphia. (Before the surgery, we decided to sign up for a New Year's Eve dance and Jubilee; figuring we'd at least be with friends even if I couldn't dance very much.) The staff never knew why I was so happy when the timing worked out!

Week 3 also featured the most emotional point of the ordeal. Because of my stitches, and then due to the markings on my head, I wasn't allowed to shower; which is my preferred time/place to shampoo my hair. So, Ken was once again pressed into service washing my hair, as he'd done after my earlier biopsies. (I always joked that if the computer business ever went bust, he'd have a great future as a shampoo girl. You can guess the usual reaction!) Although we'd been warned that I could suffer some hair loss, nothing could've possibly prepared us for that fateful day when I cleaned out my comb three times. Everything had suddenly, finally, hit us - and we simply sat on the bed and cried in each others arms for several minutes. However, I was fortunate in that the hair fell out "from underneath" - there were no obvious bald spots. It was hard to tell I had lost any hair at all - the truly observant would've imagined that my hair had thinned a bit in the back.

Another low point which we'd been warned about was that I could temporarily lose my sense of taste, since my taste buds were located within the area of my head being radiated. Again, nothing prepared us for the morning (perhaps during Week 4) when the morning coffee simply had no taste. Since I've never been able to prepare a decent cup of coffee for myself without an automatic drip machine, and Ken refuses to use anything other than an old-fashioned percolator (which I don't get along with), you can guess who's in charge of coffee at our house. You can also guess who was more upset the morning I had to admit, "They were right - I can't taste it." Fortunately, this was truly temporary - and coffee seemed to be the only thing affected. (But Ken still remembers this incident even more clearly than the day my hair began to fall out.) Somehow, I managed to maintain a decent appetite throughout the treatment cycle.

Fortunately, all the forecasters who kept adding two weeks to the projected duration of my treatments were proven wrong. I only spent a total of 5 weeks undergoing radiation therapy, ending on January 22, 1982.

Even though most patients are considered "cured" if they show no signs of cancer cells after 5 years post-treatment, Dr. Sullivan informed us early in the process that this would not apply to me because my particular cancer was such a slow-growing form. I was told I could expect at least 7-10 years of follow-up examinations. Life then became a series of checkups and pictures for the portfolios - first monthly, then every 3 months, and eventually yearly. The Radiation Therapy department finally discharged me around 1985. Now it was time to learn to cope with all that had happened...

Modified Date
2000-03-04
Killer Tandems and Other Tales of Coping (January, 1982 - 1987)

Killer Tandems and Other Tales of Coping

One of the "joys" of having a rare affliction like mine is that there is so little you can do to prepare yourself for the challenges that lie ahead. Although the staff in Radiation Therapy could warn me of the side effects associated with that treatment, no one could tell me how to cope with everything else that had happened. How do I function as a human being?

Fortunately, it didn't take me long to realize that coping was simply a matter of two basic principles:

  1. Discover what you can do - then figure out how to get around the rest.
  2. The human body is very good at letting you know when you've done something it doesn't like.

Now, let me tell you how I've really tried to get by over the years.

Sitting Strategically

Clearly, one of the things immediately affected by the surgery was my hearing ability. We began to joke that "things no longer 'go in one ear and out the other' - they simply did a U-turn back."

As I mentioned earlier, my hearing was tested before the surgery - and, as it turned out, my right ear (yes, the one that was removed) had been the "better" ear. How do I function now??? Well, having always been attracted to voices (the old radio station experience coming into play, I guess), I've become quite a critic of acoustics over the years.

I learned quickly that I could hear fine if speakers were sitting or standing either to my left or in front of me - but not if they were situated to my right or behind me. The contrast gradually grew less apparent as I became more accustomed to dealing with groups of people - and the general effects of the surgery began to diminish.

Dr. Sullivan gave me a general hearing test during one of my post-op checkups. Although he never formally estimated a "percentage of hearing loss," he did inform me that certain sounds would be more difficult to hear than others - notably those at either end of the pitch spectrum. To this day, I find that I have more trouble hearing lower-pitched voices than higher-pitched ones. I've also discovered that vocal quality plays a role - a resonant basso poses less of a problem than a "thin" voice of any pitch.

Eventually, I learned that the best way to deal with the issue was to develop the concept I call "Sitting Strategically." This requires me to determine (as best I can) the primary source of conversation - then place myself in the most advantageous position to hear it. For instance, if I'm attending a meeting, I'll try to "aim" myself toward the facilitator. If I'm in an auditorium-style setting, I'll most likely seek out a space along the center aisle with my "ex-ear" facing the aisle, so all in-row conversation is to my left (aka the "good" side).

Group dinners and other such social situations can be more challenging. This requires knowing something about the group (if possible). If Ken's with me, I'll often place him on my right. Since he can deal with my "problem," it helps prevent others from feeling awkward about my situation. (I can also tell others that "I don't have to listen to him" - which is often good for a chuckle.) This rule is "bent" for those who have resonant voices.

Of course, there are always those who will feel uncomfortable no matter what - they know there's a problem, but they'll never remember which side is "the bad one." If such people end up on my right side, I try to let them stay there as long as I can tolerate it. If I discover I'm having too much difficulty hearing what's being said, I'll simply interrupt him/her and say something like, "I think we'll both be more comfortable if I'm over there" - and promptly change places accordingly.

For square dancing, this concept is also known as "Squaring Up Strategically." It focuses on such factors as hall acoustics, speaker placement, and caller. In some halls, I can comfortably square up anywhere and have no problem hearing any caller. In other places, I find I need to square up in certain positions if I expect to succeed - and even then, it may take more concentration on my part to do so. After all, one has to be able to hear the calls in order to execute them properly! This is especially important for those calls which require more than two people to interact at once. ("He said what???")

There are times, though, when all these "theories" mean very little. One evening, we were dancing with a group of folks in someone's home. A tape of a recent dance played - a chance to re-acquaint ourselves with a particular caller's style before an upcoming dance. (This is especially useful in the upper Challenge levels.). Alas, the tape heads on the recorder had broken - but we didn't know that at the time. All we knew was that the volume had become very soft - even when we turned the control to its "loudest" level. Somehow, I could hear the caller - as long as everyone else was quiet. So, for the next several minutes of dance sequences, we'd hear the caller on the tape, stop the tape, let me "translate" what I thought the caller said, execute what we thought the call was, then continue playing the tape and repeating the process. It was only when I could finally no longer understand the caller that we had to stop!

"Why me, of all people?" I asked. One dancer surmised that I probably succeeded because I had had the most experience trying to hear under adverse circumstances. Sure...

There was also a memorable experience during January Jubilee the year after my radiation treatments. January Jubilee became one of my favorite square dance events because (among other things) the ballrooms in the old Philadelphia Sheraton had such wonderful acoustics that I didn't have to worry about "squaring up strategically." One morning, we landed in a square with three couples we'd never met before. The gentleman to my right asked me about the sound quality in the hall, since he'd never danced there before. I responded, "Well, I don't have all my hearing, but I find I can dance anywhere in any hall with no problem." The rest of the members of the square were pleased to hear this - as it turned out, one member of each pair had some sort of documented hearing problem. We had a wonderful time dancing together - and the memory of that experience remains to this day.

Eyes Out To Lunch

Since I wear glasses, another early concern was how to wear them with only one ear. At first, the only solution we could think of was simply removing the right earpiece. After all, there was no longer any ear for it to sit on. This seemed to work - for awhile.

Unfortunately, I began to discover that things would look funny after I'd been reading for a long time. My eyes ceased to focus properly. I began telling people, "My eyes have gone out to lunch."

To further complicate matters, while I was undergoing radiation therapy, at least one of those l-o-n-g escalators in the Port Authority Bus Terminal (in New York City) was out of order each morning as I trudged to work after treatment. I used to live in fear that my glasses would reach the bottom before the rest of me. Fortunately, that never happened.

By late January, after radiation had ended, I had had it with the solitary earpiece - there had to be a better way! So, when Ken visited the optician to pick up his new glasses, I tagged along in hopes of discovering a solution to my plight. "Uh, I have this problem...," I said, lifting my hair to reveal my "ex-ear."

"No problem!" I was told. We handed the earpiece Ken removed before my surgery to the optician, and he proceeded to bend it in such a way that I could almost feel normal again. (Or as close to normal as circumstances would permit!) As the "elephant's ear" (aka skin graft) continued to become absorbed into the skin on the side of my head, I simply kept bending the earpiece more and more to accommodate it. I thought I was doing the right thing!

Then I finally got around to the long-postponed eye exam; originally scheduled for the Saturday after Thanksgiving, 1981. The eye doctor wasn't very happy with me: As a result of my constant "adjustments," my glasses no longer sat straight across my nose. This made correcting the vision a bit more challenging; though not impossible.

It took another 8 years and a job requiring constant use of a computer before I finally learned the real impact of my surgery on my eyes. Yes, my eyes had "gone out to lunch" again. Remember, the tumor that caused all my problems had sat on a nerve that controlled the entire right side of my face - that included my right eye! Eventually, we learned that because of my "adjustments," my eyes had ceased working together as a team to focus on objects. In addition, because the muscles in my right eye had atrophied, bifocal lenses were not a viable solution.

I was thrust into the wonderful (!) world of "dueling eyeglasses" in which I had to juggle two pairs: One was designed for reading, writing, computers and other "close" work. The other pair was referred to as "The Debugging Glasses" They were for what I called "the rest of life" - which I summarized as "Driving, Dancing, and TV." DDT, get it? (If you don't, DDT is a pesticide.) These made my life interesting for two years - then we found another eye doctor, who pronounced me sufficiently improved to return to a single pair of glasses. Whew!

(Alas, I've since had to return to "dueling eyeglasses" - but more about that later.)

One Body, Two Mouths

It took a year for me to discover the impact of my surgery on my teeth. I never thought to give my dentist a copy of my operating report. Although I'd been in fairly good dental health in the years preceding the surgery, I soon found myself in the dentist's chair more often than ever as the teeth on the right side of my mouth began giving me problems. Fillings had no interest staying inside teeth. Finally, the dentist told me, "I see one body in the chair, but I see two mouths." My left side was fine, but the right side had turned into a disaster area of decay.

Upon further reading and a chat with Dr. Sullivan, we discovered the cause of my problem: The fact that my parotid gland had been removed. The parotid gland is responsible for manufacturing saliva. Although I knew this was the reason I was drinking more water than I already did (and I was a major "water drinker" long before the surgery), I soon learned another important fact: It turns out that without saliva, teeth will decay as much as 80 to 95 percent faster. No wonder I was having problems!

Soon after this diagnosis, the dentist experienced the perfect timing of visiting a major dental trade show in New York City; where a special toothpaste was being test marketed. On my next visit - for yet another lost filling - I was given a tube of Biotene and ordered not to use any other toothpaste. Within a few weeks (and, yes, another problem on the right side), the dentist could already see a positive difference in the tissue. I haven't touched commercial toothpaste since. However, it took several more years - and caps on most of the teeth on the right side - to finally eliminate the problem.

Killer Tandems

One of the best things I could've done for myself after losing my ear was take Challenge square dancing lessons. Challenge is the collective term given to the most difficult levels of square dancing. (For further information, see Introduction to (Challenge) Square Dancing ) It's probably the main reason I've been able to continue dancing in spite of all these surgeries over the years.

We started our workshop in April, 1982 in the West Windsor, NJ area. We often joked that the connection between I-195 and the Garden State Parkway was completed just in time for us to begin making these regular trips across the state.

As I've told many people since, at the Challenge level "the exertion (for the most part) is more mental than physical." It's full of interesting concepts that go well beyond the traditional dos-a-dos. One such concept is tandem, in which two dancers standing one behind the other act as a unit of one. Often, the dancer standing in the "rear" position may tap the dancer in front of him/her in order to establish the unit. In the worst case, the "rear" dancer may opt to "steer" the other dancer through the movements being called. You can imagine how painful this can be for the dancer being "steered" - especially if that dancer has a sensitive shoulder! This became all too apparent one evening when a shorter woman decided to hang onto me for dear life - OUCH! I tried to be subtle about it - jerking my shoulders about to try and get her hands off of them. Eventually, the grip became unbearable and I wound up reaching up and "peeling" the fingers off my aching right shoulder. I then sat out for awhile until the throbbing ceased.

A year or so later, we noticed a collection of small badges that could be worn as a "warning" of a problem. We purchased one that read OUCH! SORE SHOULDER and began attaching it to my blouses or dresses at the shoulder blade. Yes, I was now wearing a badge on my back - and dancers seemed to enjoy reminding me of this - sigh! But I only wore it for Challenge dances in an effort to prevent what I now called "Killer Tandems," I explained. Alas, after awhile I painfully discovered that the badge was simply too difficult to read. I began to refer to it as "The Challenge Dancer's Eye Test" - and too many flunked.

We finally arrived at the current solution by 1987 - a red badge with large white letters that simply read OUCH. We also asked a badge manufacturer to create a similar badge with white lettering on black for those occasions when I wear a red dress or blouse. It's still not the perfect solution, though - Ken has joked about pasting plastic "tentacles" to the badge as a deterrent. Even though the skin graft of 1981 has long healed, there's still some sensitivity in the area - and I really don't need to find out how much remains!

Modified Date
2000-03-04
Playing Pac-Man (February, 1992 - Spring, 1993)

Playing Pac-Man

While we were struggling to face the prospect of lung surgery, Parade magazine came out with an article describing new breakthroughs in minimally invasive surgery (MIS). Such techniques have been used for several years to remove gall bladders quickly and with much less pain and discomfort to the patient. As a result, most patients are able to recover much more quickly than via conventional surgery. To our surprise, we noticed that one of the hospitals cited for its work in MIS for lungs was St. Peter's Hospital in New Brunswick, NJ - a local facility for us!</p> <P>We brought the magazine with us to our next appointment with Dr. Solis. He informed us that the procedure has actually been in use for several years - and he could do it for me too! And so we prepared to make arrangements for my first lung operation, tentatively scheduled for February, 1992 - after my brother's wedding on February 9 in Florida. (Priorities, you know.) <P>In the meantime, we decided to get a second opinion on the matter. (Maybe we were finally learning? Besides, getting additional opinions was now becoming a requirement for medical insurance companies.) Ken's uncle - yes, Dr. Solis' ">We trudged down to Philly, armed with copies of all the reports we'd been collecting. After a seemingly endless wait, we were finally ushered into a tiny examining room. My basic medical history was taken. A physician's assistant came in and rapidly pored through the several-inch stack of papers we brought, seeking to crystallize everything into a brief oral summary to present to the doctor when he finally arrived. Ken sat in a chair in the back corner of the room. It was hard to remain calm.

Finally, Dr. Brady, a kindly old gent who reminded me of the old men back in Riverview's Radiation Therapy group, made his entrance - along with an entourage of residents (the joys of being in a teaching hospital!). The room began to remind us of the stateroom scene in the Marx Brothers' movie "A Night At The Opera." That's the scene where more and more people enter a tiny room - only to have all of them finally spill out into the hall. Although we never reached the "spillover point," it got awfully cramped in there! Ken really began to feel scrunched in his corner. One of the doctors kept looking back at him every few seconds and apologizing for having her back towards him.

The physician's assistant presented my case - as a Toastmaster, I was amazed at the clear, concise way he could do this in the short time he had to prepare. The doctors took turns looking me over - staring, poking, prodding. I began to see visions of research papers dancing in their heads. My CT scans were placed on the lighted screen, and everyone gathered to look at my spots. Some discussion ensued over the possibility of beginning chemotherapy immediately - and it didn't sound good. "Oh great," I thought. "Go straight to chemo. Do not pass Go. Do not collect..."

Suddenly, Dr. Brady decided he needed another opinion. I was told to get changed and wait while he got one. Now we were really getting scared!

Shortly after I got changed, Dr. Brady approached us. He pointed out that since the CT scans were from November, things may have changed; so it was best to take another set of pictures before proceeding. An appointment was made for me to have a CT scan that afternoon at a radiology facility across the street. Since it was now past 12 noon, and I hadn't eaten since our early-morning breakfast, I was really starving. Now I wouldn't be able to eat anything until after the scan was done - how was I going to get through this without passing out?

I finally had the scan in mid-afternoon, and I finally got something to eat by 4 p.m. - the fact that it was hospital cafeteria food didn't matter! Now we had to wait for a doctor to become available in order to review the scan so we could determine the next step. We all finally got to peek at the film by 5 o'clock - and discovered that very little had changed. Dr. Brady approved my plans for surgery - whew! The operation was scheduled for February 18, 1992 at Bayshore Hospital in Holmdel, NJ. (We had a choice of Bayshore or Riverview, but selected Bayshore because it was a little closer to the Garden State Parkway. Since Ken was now working in downtown Manhattan and commuting by train, we felt this was an easier place to drive to after work.)

I began to learn about the wonders of Pre-Admission Testing: The chest x-ray. The Pulmonary Function Test (breathing into a tube isn't easy when facial paralysis prevents you from blowing into it properly!). The blood work. The waiting. The phone calls. I became acquainted with the crew in Bayshore's Same Day Surgery Unit, where this new journey would begin - even though I'd remain in the hospital for longer than a single day.

And I learned a bit more about the procedure, called a thorocotomy. As I understood it:

  1. The operating room would have two TV monitors; one for the surgeon, the other for the assistant.
  2. Three small incisions would be made into my back and side (as opposed to being cut open at the sternum, the conventional method of lung surgery). The surgeon would insert a tube with a TV camera at its end.
  3. Once everything was set up, the doctors would use the TV picture to figure out the best way to go after the tumor and remove it. I referred to the process as "playing Pac Man." As an absolute video game klutz, I certainly hoped they were better at the game than I was!

Round 1

Two spots were removed from my left lung the morning of February 18, 1992, in an operation that lasted about 3 or 4 hours. I don't recall the Recovery Room. I awakened in the Intensive Care Unit (ICU). I vaguely recall seeing family members and medical personnel coming and going. I had little sense of time (although I kept asking about it), but a pretty good sense of pain - and there was plenty of that!

I seemed to sleep in 2-hour spurts. As I awoke from one such spurt after Ken had left to go home, who should appear in front of me but my friend Roger from the Bell Labs Technical Publications Center! (I had left the group in 1990, but maintained a few friendships.) Now, I thought ICU visitation was limited to family members - and Roger looked nothing like Ken! So, how did he get in there??? I later found out that a hospital volunteer simply looked me up in the patient directory and told him I was in ICU - and gave him directions for getting there without asking any questions! Unfortunately, I wasn't very good company, so I soon suggested that Roger would be better off trying to visit at another time. It was sometime around midnight, when the anesthesia completely wore off and my mental faculties had completely returned,when the nurse noticed a card sitting on the table next to my bed. Guess who left it behind!

I was moved out of ICU into a regular room the next afternoon - just in time to begin watching the women's figure skating competition at the Olympics. Ken didn't know until he went to the ICU and found my bed empty! He began to take advantage of the support available on the Cancer Forum. He posted the following update on February 19:

Hi,

Helena was moved out of the ICU this afternoon into a regular room and the doctor mentioned to her that she might be released tomorrow, but she doesn't think she wants to come home yet. She is still in quite a bit of pain (hugging is out for awhile:-( ) The mention of a second surgery caught us by surprise when the doctor mentioned it yesterday, but when you think of it, it makes sense that the doctor doesn't want to operate on both lungs at once.

It would be awhile before I could have the next surgery... Once again, we "missed" hearing some information along the way. We knew there were spots in both lungs, but the thought of separate surgeries didn't seem to make sense to us at the time.

Although I was a new member of this on-line group, support and encouragement came quickly. Here's one piece of advice Ken received:

Okay, no hugs - but I'm sending them electronically, anyway. I have it on good authority that electronic hugs NEVER hurt!

Even before I got into a "real" room, I had to attend to the business of recovering my lung functions. A taskmaster in the guise of a respiratory therapist appeared with orders for me to "hug" my pillow close to my chest and encouraging me to cough as often as possible. I guess this was a way to exercise my lungs and making sure everything inside stayed clear. Once I landed in a regular room, I had a new game to play: A breathing tube attached to a console with a series of lights. I needed to breathe into the tube such that the lights would blink up to a certain level - several times a day.

Life in the hospital was something of a roller coaster - and not just from the blinking lights I had to play with. Ken posted the following to the Forum on February 21:

Helena had a slight setback today. She wasn't feeling too well and was running a low grade fever. The doctor said that he didn't like the looks of this morning's x-ray and put her on a mist treatment to clear her lungs (4 times a day). He thinks there may have been a clot that has since passed, since there is more drainage today than yesterday. So it looks like Sunday would be the earliest that she could come home.

The mist treatment was a supervised session in which I'd use a type of inhalor for a few minutes several times a day. Just another necessary evil, I guess. As it turned out, it took several months for the clot to completely dissolve.

I was discharged from Bayshore on Sunday, February 23, 1992. Dr. Solis removed the last of my stitches a few days later. I took my first Mall Test shortly thereafter, and began to discover new things I'd have to adjust to:

  1. Although I'd already discovered the challenge of negotiating stairs, I soon learned that steep hills and ramps weren't easy either. At home, I was confined to the upstairs "trio" of the bedroom, bathroom, and computer's room.
  2. I was surprised to learn the impact of wearing shoes with heels on my ability to breathe. Although the highest heels I ever wore were 2 inches, I immediately had to change to something lower.
  3. Fnally, I learned that shoulder bags weren't very good for me either - even when I tried to reduce the "weight" inside as much as I could. It would be another year or so before Coach came out with a large enough bag with two types of handles (shoulder and "close to hand") - until then, I had to watch how long I'd attempt to walk around with my bag...

I returned to work on March 2. This was probably not a very good idea, as it took me several weeks to regain my strength. Unlike the aftermath of my 1981 surgery, when I could count on mass transit to get me to/from work, I now had a 23-mile drive to the office to contend with. As I recently reminisced to a Cancer Forum member preparing for lung surgery (in part):

Since I'm naturally an early bird, I'd arrive around 7 and leave around 1 for the first week or so. Lunchtime was my "exercise" period: It was a long hike from my end of the building to the section where the cafeteria was located. Of course, I was in bed and asleep in a very short time after arriving home. It's just one of those things you learn to deal with - comes with the turf.

I began to settle into the routine of CT scans and checkups - fortunately, nothing "new" (that we weren't already aware of) surfaced.

Round 2

In May, Dr. Solis pronounced me well enough to begin considering the next operation. We decided on Monday, July 6 - shortly after our vacation (and his). I had my CT scan done before we left for our vacation, then had the Pre-Admission work done after we came back.

Surgery was scheduled for first thing in the morning. We couldn't help but wonder when Dr. Solis would arrive this time, since last time everything was ready early - and he was nowhere to be found. This amusing thought was good for reducing the tension of another operation.

Alas, the fear and trepidation was only about to begin. Dr. Solis walked into the Same Day Surgery Unit, approached my bed - and told me there would be no surgery that morning. He had reviewed the CT scan - and noticed something unusual around the adreanal gland. This was frightening! Before going any further, we needed to check this new development. I agreed to undergo another CT scan. Why not? Might as well accomplish something while I was there!

It wouldn't be easy, though. The CT machine was broken. We were told that once it was repaired, all those patients already in the hospital scheduled for tests would have to be taken care of first. We agreed to wait - and wait.

During that time, we all tried to figure out what could've happened. I thought back to the CT scan I had only a few weeks earlier. The technician had said he had trouble concentrating while he was giving me the test, as he was dealing with a room full of people he couldn't throw out. I remember being asked to hold my breath a little longer than I was used to - and there had been a point when I simply had to let it out before I was told to do so. My sister eventually concluded that there may have been a false reading. By the time I finally got to have my new CT scan done (at noon), I had heard that the machine had been having problems for a few weeks - perhaps at the time of my last scan.

Finally, around two o'clock (after Ken and I finally had lunch), Dr. Solis met us back in the Same Day Surgery Unit with the results. There was good news and bad news, he informed us:

  • The Good News: My adreanal gland was fine. We could proceed with Lung Surgery #2 on Thursday afternoon.
  • The Bad News: Instead of the one spot we were aware of back in January, there were now three. To make matters worse, another spot appeared in the left lung. We'd have yet another one of these operations to look forward to...

We finally went home, exhausted. I took the next day off from work to recuperate from the stress.

We returned to Bayshore on Thursday, July 9. As Ken reported to the Cancer Forum on July 10:

Helena came out of surgery OK. It took about 4 hours and she was in the Recovery Room about 3.5 hours. She didn't get to the ICU until 10:30 p.m., but they let me see her in the recovery room at about 9:30.

We spoke to the surgeon briefly after the surgery and found out he had to open up the chest to get two of the nodules out since they were not on the surface of the lungs, but inside about 1/2 inch and the 3rd spot was really 2 small spots that merged on the CT scan.

When we left last night she was resting comfortably and she was alert.

This taught us an important lesson about MIS: It only works when the tumors are close to the surface. That TV camera isn't an x-ray!

I came out of this operation much more alert than last time, which probably made Ken's updates more interesting:

Update #1 On Helena (July 11)

Helena is doing as well as can be expected, actually the doctor said she is a very good specimen! :-) She was moved to a regular room this evening (Saturday) from the ICU. But she doesn't like it as much - not much light, old-fashioned bed (the one in the ICU had nifty buttons on the side to control the TV, call for the nurse, and control the bed itself), and a much smaller TV...

To further demonstrate my sense (?) of "priorities," I tried out the TV after everyone had left the ICU that first night after the surgery. I didn't mind hearing the 11 o'clock news, even if I couldn't see a thing! (Ken hadn't returned my glasses to me yet.)

My room in ICU this time around was in a brand-new section. It was so new that the nurses hadn't had much experience with some of its new features like the tray table - as we found out when my first clear liquid lunch landed all over me when the nurse pushed the wrong button! (Well, that got me out of bed in a hurry!)

This hospital stay went much better than the first one. Among those impressed with my progress was the respiratory therapist who'd seemed to be such a tyrant the first time around. While I was in the ICU, she told me, "You're looking much too well." She also had a new breathing toy for me to "play with" - a ping-pong ball in a narrow, 6-inch plastic cage that was attached to a small breathing tube. The object of this game was to make the ball rise to the top of the cage - yes, another challenging "blowing" project. (By now, I had accepted the limitations of my facial paralysis and figured out how to get around this task.) I often contemplated bringing this toy to the office and displaying it as some sort of a conversation piece, but I never did.

I didn't last long in ICU, and I was soon sent to a regular room in the same wing where I'd stayed during Round 1. Once I discovered how limited my right arm's range of motion had become from the surgery, I tried to resurrect the "climbing" exercises I had learned back at Mt. Sinai; as well as any other excuse I could find to move the arm around.

Ken continued to provide updates:

Update #2 (July 13)

All is going VERY well. If tomorrow's x-ray is clear, Helena will be released tmorrow morning to finish recovering at home!

Update #3 (July 14)

She's HOME! But with as much discomfort at home as in the hospital!

When she is strong enough to sit by the terminal, I'm sure she will type a lengthy report on what happened... :-)

The "lengthy report" took three successive posts, thanks to CompuServe's message length limits. Here's the combined post, titled "What Happened," written July 22:

Finally have strength (I hope) to be able to sit & share what's been going on these past few weeks. Before I begin, let me once again thank all of you for your support during my hospital stay - Ken & I truly appreciate it!

So, what happened? In brief:

  1. It appears that what was thought to be 3 nodules turned out to be 4 - the 'one' we knew about at the start was actually 2 that appeared to 'merge' in the image of the CT scan.
  2. Although I'm not certain of specifics, apparently, only 2 nodules were removed via "video" (ala last time) - the others were below the surface, invisible to the camera. This is why the dr. had to cut.
  3. However, the doc only (ha!) cut muscle between ribs in order to reach the "hidden" nodules. This prevented the need to break ribs. He also felt around the entire lung afterwards to ensure there were no additional nodules - there weren't.

Amazingly enough, I was quite alert once I came out of anesthesia. I woke up in the Recovery Rm. this time (last time I didn't awaken until I'd reached ICU). Family & med. staff were all amazed how well I looked - Ken said I looked much better than after the last operation. Go figure...

At least I continue to heal quickly, one trait that has carried thru all my biopsies/surgeries. Last Thurs. I saw the doc expecting to get my dressing changed so that I can shower - but he also removed all my stitches. On the other hand, I've been ordered not to return to work until after he sees me again - in 4 wks. :-(

Despite all the accolades, this recuperation is going to be much more painful than the last - especially as far as my right arm is concerned. For one thing, it limits the amount of time I can hang out on the computer. ;-) I have to force myself to exercise that side (ouch!), recalling that I already have atrophied muscles in that neighborhood from 10 yrs ago (chunk of shoulder blade was grafted to "replace" my lost right ear). Knowledge may be power but...

Perhaps now I can begin to turn the corner - perhaps get away with fewer doses of painkillers, maybe even sleep for more than 1.5 hrs at a time. Hopefully by week's end I can handle a short trip outside, but for now I'll stay upstairs, confined to these quarters (bed, bath, and computer's room).

And that's the story - for now!

This surgery was especially rough on Ken. Even though he was able to go back to work on Tuesday and Wednesday, he never made it back to the office until a week later. Since surgery was late Thursday, he stayed home Friday. Then came the weekend. On Monday, he overslept (I couldn't give him "wake-up calls" from Bayshore.) and when he finally called me at 10 a.m., Dr. Solis had just given me the word that I could go home the next day. So, I went home on Tuesday, July 14. Since I knew I couldn't function well alone on my first full day at home, Ken stayed with me on Wednesday. And then we saw Dr. Solis on Thursday for my first post-op visit. Ken finally got back to work on Friday!

This surgery was probably the most difficult of the three lung operations to recover from. Because it affected my right side - the side I normally sleep on - I had a tough time getting comfortable in bed. We eventually concocted a crazy collection of pillows and towels - along with a backrest - for me to lay on in order to sleep. I spent over a week in that position.

On the other hand, I did have a suitable distraction - the Olympics. Once Dr. Solis announced I needed to be home at least 4 weeks, Ken finally consented to order the complete NBC Triplecast package. Between the TV coverage and internet discussions (once I could spend enough time in the computer's room), I was kept sufficiently occupied, which helped lessen the impact of the pain.

I returned to work August 17, 1992.

Round 3

Sometimes naivete can be refreshing; other times it can cause problems. By the time we got through Round 2, we discovered more things we "should've known."

First, there was the matter of disability. No one ever really took the time to inform me of such things as: How much pay I was entitled to - full-time vs. part-time. Was there a required length of time between occurrences to be concerned with? As it turned out, I managed to squeak by the requirements between my two surgeries - probably because I'd returned to work too soon from Round 1. After Round 2, however, I began seeking out copies of the Personnel Guide, so I could (finally) find out exactly what I needed to know.

More important was the matter of insurance. Ken switched jobs in July 1991 - just as I was pondering AT&T's new benefits options. A cursory glance at Ken's new plan indicated that his medical benefits package appeared comparable to mine, so I selected the Standard option. Of course, this took place months before that fateful chest x-ray. When it came time to begin thinking about benefit payments, we made the sad discovery that Ken's new plan did not have "coordination of benefits." That meant his insurance plan would cover nothing that mine wouldn't already pick up - unless his plan's "reasonable & customary" rates were higher than my plan's (then I'd get the difference). This was very frustrating, not to mention expensive.

We even - finally - got around to asking the all-important question, "Why?" How come I had all this stuff going on in my lungs when I'd been assured back in 1982 that all the cancer had been removed?

We learned the probable cause during one of our visits with Dr. Brady: Before I lost the ear in 1981, some deviant cell probably broke away from the rest of the tumor and took a trip down the bloodstream, settling in my lungs. Since my cancer is (usually) such a slow-growing form, it takes 7-10 years for the cell division to progress far enough (from 2 to 4 to 8, etc.) to reach the point where the tumor can even been seen on an x-ray or CT scan. Since my spots were so small, I guess I just happened to get that fateful x-ray at "just the right time." Later on, one of the doctors who contributed to the Cancer Forum noted that the lung was another "favorite place" for adenoid cystic tumors to recur - we already knew that the lymph nodes were a prime target (that was why I had radiation, as a way to ensure it wouldn't recur there). The doctor also mentioned that it wasn't uncommon for patients to have such tumors for as long as 15 years before being treated. To top things off, Dr. Sullivan eventually informed us that the years 10-15 post-treatment were the "pivot point" - if any "major recurrences" were going to happen, that's when they'd most likely take place. Looking back, I guess I was right on schedule...

So, armed with all this new (overdue?) knowledge, I scheduled my third lung operation for Tuesday, January 19, 1993. By then, I passed my 5-year service anniversary with AT&T, which entitled me to receive full-time pay on disability for many more weeks if necessary. Also, my revised insurance plan (now the High option) would become effective, lessening the financial impact. In addition, there were two "other" concerns that illustrated my sense of "priorities": First, surgery would be scheduled after the January Jubilee square dance weekend. (Why shouldn't I have some fun before this ordeal?) Next, I figured I could spend the day after surgery watching Inauguration Day festivities on one of the 'good' TVs in the ICU.

Think I was becoming a little too comfortable with "the drill"?

Here's my summary to the Cancer Forum (another combination of 3 posts), written January 30, 1993:

Well, you've heard the "condensed" version from the Other Half, now here's "The Inside Story" from the patient herself!

Although this was the 3rd time, I've learned that each event comes with its own set of challenges. Here - as briefly as I can make it - are some of the highlights of the past 2 weeks:

Basics: Surgery ran about 4.25 hrs. There were 2 spots to remove - the 5mm spot cooperated via MIS (minimally invasive surgery), the 3mm was located deep within the lung and kept folks busy. I heard both the surgeon and asst. went nuts searching for it (though, as a result, found nothing else in the lung to worry about). About 5% of the lung got cut, but the incisions appear more toward the shoulder blade and smaller than the ones on the other side made during Round 2. So, I don't have the range of motion problems that plagued me following Round 2.

The 1st 24 hrs proved to be worse than the comparable time periods following Rounds 1 and 2 combined. Chief culprit was the breathing tube the lung specialist insisted on keeping down my throat overnight; much to the chagrin of all (esp. since all other indicators, notably blood gas levels, appeared OK). But the doc was merely being cautious - it was the tube or risk pneumonia. Oh well! However, when not asleep, I was more than fully alert - the nurses eventually knew to keep a clipboard handy so I could communicate when charades failed. By 6 a.m. Wed., I was feeling reasonable enough (all things considered) to take advantage of the TV in the ICU room so I could keep up with the Inauguration stuff. Besides, it helped take my mind off the tube.

Tube finally came out at 10:20 a.m. - boy, was I ever happy to see the oxygen mask! It wasn't on for long, though - I graduated to the nose thing within about 2 hrs., along with the infamous breathing toy. Promptly treated (!) to the clear liquid diet for lunch - at least there was enough stuff worth having to avoid the gelatin cubes! ;-)

Was rushed to a real room Thurs. I say rushed because the hospital's been very busy since the holidays and they were desperate for my bed, both in Recovery and ICU. My "reward" was a private room for the rest of my stay - not bad, once they got everything in working order. And, it was in the same wing where I spent my earlier stays - lots of "You again?" or "Haven't we seen you before?"

Was able to come home Sunday morning. Once I got my Percoset perscription filled, things weren't too bad, all things considered. At least this time I didn't have to concoct the wild network of pillows and backrests I needed for sleeping that I did after Round 2! But, we still have our moments...

Saw the surgeon this past Thurs. and he removed all the stitches (at least I still heal quickly). Nevertheless, I'm ordered home for most of the next month - next appt. is 2/23, the day after I see the oncologist at Hahnemann to discuss what's next. My surgeon doesn't think I need chemo, but we'll see.

So that, in brief, is the story for now! Thanks from both of us for all your support!

I suppose I gave the ICU nurses something to remember: Not being able to talk wasn't about to prevent me from communicating! That clipboard often contained messages such as "This is scratching the back of my throat!" "How much longer????" or "This is a pain!"

I eventually learned that the breathing tube was kept in because the lung specialist didn't like the way the lung had reinflated after the surgery. When he finally arrived at my bedside after the tube was removed, he first words were, "Do you want to kill me now?" Unfortunately, I didn't have the presence of mind to offer the appropriate rejoinder: "Line forms to the right..."

Once I got home, this may well have been the easiest of the three surgeries in terms of recuperation. (Watching tapes of the events I missed from 1992 Winter Olympics helped.) Perhaps I could attribute some of this to the fitness center at AT&T. I had joined the facility in Basking Ridge when I transferred there in 1990; and when all this started, I told my manager I'd be spending as much time as I could there. I had read that surgery would be easier to endure if I was as physically fit as possible. The treadmill eventually became my "progress chart": After Round 1, I had to reduce the settings to the lowest levels possible and work my way back up. Although I didn't quite make it back all the way before Round 2, I didn't need to make such drastic reductions after I returned to full-time work in September, 1992. By the time I came back from Round 3, things were even easier - relatively speaking, that is!

Throughout my lung surgeries, I pursued job hunting within AT&T. The job I had taken a year before that fateful x-ray turned out to be a bad choice. For several reasons, I couldn't begin to think about applying for another job until 1992 - but I started submitting applications before entering the hospital for Round 1. After all, I still had a career to consider! However, the period between 1991 and 1993 was a difficult time to be job hunting within AT&T. Although I went on several interviews (including some via phone from bed while recuperating at home), I couldn't get an offer. My manager, who was probably more anxious for me to find another job than I was, didn't make my life especially pleasant. I eventually concluded that three lung surgeries were far less difficult to endure than my work situation.

Things finally took a turn for the better in the spring of 1993. I began a new positon on May 1. Dr. Solis promoted me to 6-month checkups. Then Dr. Brady told me I wouldn't have to undergo chemotherapy. (Apparently, adenoid cystic hasn't proven very responsive to chemo, so "why subject you to all the toxins?" he explained.) Now I could simply concentrate on regaining my strength one more time!

But I wasn't prepared for the next surprise...

Modified Date
2000-03-04
A Stressful Anniversary (1987 - January, 1992)

A Stressful Anniversary

And so everything proceeded quite smoothly for nearly 10 years. My facial paralysis diminished somewhat - although my mouth was no longer a 45-degree line across my face, there was a definite "droop" to the right side of my face. The "numb line" had receded toward my "ex-ear." I still needed to make certain adjustments for eating and drinking, although the drooling had ceased. I was resuming a normal life, with all the normal trials and tribulations that come with it. And, I guess folks were trying to adjust to me and my adjustments.

I never saw Dr. Biller again after I was discharged from Mt. Sinai. Even though I worked in midtown Manhattan (until July, 1983), we found the trip to the Upper East Side a pain, so I was permitted to keep my follow-ups local. I saw Dr. Sullivan faithfully each year, passing my annual checkups with flying colors.

I started working at AT&T Bell Labs in December, 1987; a few months after Ken and I moved into our present home in Hillsborough, NJ (about 20 minutes from Princeton).

In September, 1988, I finally took the Labs up on its offer of a free hearing test. By then, I needed to know whether to self-identify as a disabled person (under revisions to the Civil Rights Act) due to my lack of hearing. To my surprise, I found out that while my right ear (the better one before that fateful surgery) tested at levels below "senior citizens with nerve damage," my left ear had overcompensated. I didn't need a hearing aid. However, I did request a speakerphone in the office - holding a phone over one's ear for extended periods of time can be quite painful if you can't "switch ears."

Although I worked for a major corporation with a lovely employee medical facility, by 1990 - when I transferred to the Business Communications Services business unit - AT&T no longer seemed to believe in preventive medicine. My request for a chest x-ray - Dr. Sullivan's only follow-up requirement - was denied as a "third party" request. So I went without one - until November, 1991. I figured I'd be in big trouble if I showed up for one more checkup without one.

So, one fine Saturday in early November, I decided to take myself to Somerset Hospital's out-patient department and request a chest x-ray. I gave them Dr. Sullivan's address and phone number, and that was that - or so I thought.

My checkup was scheduled for November 19, 1991 - the day after the 10th anniversary of my surgery. I had been in a pretty good mood. New York magazine had just published a special issue featuring "The Best Doctors in New York" - and Dr. Biller was on the cover. I anticipated a very pleasant chat with Dr. Sullivan. I did not expect the phone call I received at work the Friday morning before my appointment.

It was Dr. Sullivan's office. The voice on the other end informed me that he had received the report from the x-ray - and I was being ordered to undergo a CT Scan. I requested the CT Scan be done at Somerset, and the nurse agreed to make the appropriate arrangements - as well as reschedule my appointment with the doctor. I hung up the phone. My body felt numb. I called Ken with the news

As the morning progressed, I began to feel a sick sense of panic. What did this mean??? I called Dr. Sullivan's office back and requested to speak with the doctor. He called me back later that day. He explained that the report indicated there had been "shadows" on my lungs. "It could mean one of two things," the doctor said. "They could either be a blood vessel turned on its side. Or it could indicate a recurrence." Although I didn't say so at the time, I immediately placed my bets on the latter.

I was advised to locate copies of any and all reports and x-rays I could possibly find, in the hopes this x-ray could be compared to something in my recent past. The medical department at Bell Labs had no film of the chest x-ray taken when I began my employment there. Dr. Biller's office never returned any of my calls. It was a rough few days until I had the CT Scan.

I saw Dr. Sullivan on Nov. 26, 1991. The films from Somerset had just arrived that day, so the three of us - the doctor, Ken, and I - took a look. Ken later told me he could see the three tiny spots. It was the first time I had ever taken a serious look at such films - and they made little sense to me back then.

Dr. Sullivan asked if he could circulate the films among some radiologists he knew for their opinions - after all, as an ENT (Ear, Nose, Throat) specialist, what did he know about lungs? He promised to call back in a week or two. We spoke again about two weeks later. He said the radiologists all recommended waiting 6 months to see what might happen. However, the last person to see the films was a thoracic - and he said the spots were "the smallest that could possibly be biopsied" and was willing to see me if I so chose. Dr. Sullivan gave me Dr. Solis' address and phone number. I wasn't sure whether to feel better or worse.

I called the Riverview Physician's Referral Service to get some information about this new doctor who may be entering my case. Once I felt assured that this fellow was experienced, I called for an appointment. When I mentioned Dr. Sullivan's name as the referring physician, the voice at the other end sounded impressed, and told me he has a "very good reputation." How reassuring to know this after 10 years! Sometimes we CAN find treasures in the phone book!

We met Dr. Solis for the first time on December 26, 1991. He immediately reminded us of one of Ken's uncles. A friendly gent with a lovely Spanish accent, he recommended I undergo a "fine-needle biopsy." I was told this was an out-patient procedure (as long as my lungs didn't collapse!), and that only one of the spots would probably be biopsied - the one that was easier to access. Although the doctor seemed upbeat, I'm not sure we felt the same way. This was unchartered territory! I made the appointment for Tuesday, January 7, 1992, back at Riverview.

It was at this point that I decided to do some serious explorations on CompuServe. Although I had been a member since 1990, I hadn't used it for much more than news reports and the Journalism Forum. Now, I discovered the Cancer Forum - a place for patients, survivors, caregivers, and medical professionals to share their own special brands of expertise and support. Here was a place where I could ask about that biopsy!

It was a little while before I could ask, though. One of the main topics under discussion had to do with radiation therapy - something I had some experience with! As it turned out, I actually had valuable information to contribute. So (surprise!) I introduced myself as a 10-year survivor and made my contributions. I was immediately welcomed by the regulars (with arms as open as wide as can be on-line!) as some sort of walking miracle. Reading about others' experiences proved to be emotional for Ken and me, though. All this stuff about various treatments, emotional worries, insensitive doctors or insurers made our heads spin and our eyes well up with tears. "We have NO problems!" we concluded.

Having had lots of experience with Usenet by now, it didn't take us long to grasp the local jargon of the Forum. Cancer was known as "the dragon." Metastases was referred to as "mets." Medications were "meds." Doctors were, of course, docs. And the hospital was known as "the joint" where patients were placed "in slams."

Eventually, I got around to explaining my real reason for being in the Forum: I needed to have some questions answered about this fine-needle biopsy. How much will it hurt? Will I be able to go back to work the next day? What else should I know? From the replies that followed, we concluded that I'd better pack an overnight bag "just in case" and plan on taking the next day off from work.

Well, I made it to Riverview, and was pleased to see how much it had changed since my last biopsy in 1981! Amazingly enough, they still had me in their computer system - all I needed to do was provide my new address and insurance information.

Then it was time for the procedure. I changed into a hospital gown and sat down at the CT scan. The doctor (whose name has long faded from memory) and nurse came over to explain what was going to happen. Although the nurse kept reassuring me I was in good hands, the doctor had little bedside manner whatsoever - I felt I was dealing with a combination of Dr. Ross and The Young Jerk. He kept warning me every few minutes that my lungs could collapse. I kept thinking just how much I wanted to get the procedure over with!

I was strapped onto the CT scan table. My gown was removed, and the left side of my chest was marked up. From what I could understand, none of my spots was in a particularly accessible location. This wasn't going to be easy.

I was shoved in and out of the CT scan. I was told when to hold my breath and when to breathe, looking at the flashing red and green lights (that strained my already diminished peripheral vision) for the appropriate signals. It seemed that the biopsy itself would be a "one shot and one shot only" type of deal. Nothing like a little pressure...

Apparently, certain parts of the procedure could only be done when my lungs were fully expanded. This isn't easy when you're in pain. "Sorry," I'd say when I guessed I didn't breathe at the right time. "Don't sorry me!" barked the doctor in response. Sigh!

Finally, I'd been shoved in and out of the apparatus enough to obtain suitable scans so the doctor could determine the appropriate means of attack. I turned my head away from the doctor and looked toward the nurse, who was holding my right hand. There was a stab on my left side - and a "thumbs up" signal from the nurse, who was standing on my right side. Whew! The worst was over!

Or so I thought. After some more shoves in and out of the CT scan, I noticed the right side of my chest was being marked up. "Oh, so you're going to go for two?" I thought to myself. Heck, I was still strapped down - that made me quite a captive audience, didn't it? And so the procedure was repeated all over again...

Finally, it was all over. I was cleaned up and sent across the room back to the dressing area to get changed. As I staggered over, I noticed that the doctor was in the nearby family waiting area chatting with Ken. (Maybe there was something to redeem this chap.) My husband later told me he thought the doctor was "a nice guy." That's what you think, Ken...

As tired as I was from the ordeal, I felt my mind needed an escape. I got a ride to a local BPW (Business & Professional Women's Club) meeting being held near the house - it was good to be with people again. Then I took the next day off from work - I was tired and sore. But, at least my lungs didn't collapse!

On Friday evening, Dr. Solis called with the results. It was adenoid cystic. Here we go again...

Modified Date
2000-03-04
The Red Shirt (August, 1993 - 1994)

The Red Shirt

If you've visited some of our other web pages, you know that square dancing has long held a special place in our lives. Not only has it been a wonderful social outlet, but also the source of many special friendships over the past 20 years. It was dancers who encouraged me after I lost my ear in 1981, when most members of my synagogue turned away. The couple who kept asking Ken whether I was "for real" when I tried my first round dance after that infamous surgery constantly called to check up on me throughout (and in between) my 3 lung surgeries. Thanks to the internet, I now had square dance friends from around the world - and many sent get well wishes in response to Ken's postings describing my progress. A few even phoned me while I was in the hospital!

Perhaps, then, it was appropriate that square dancing played an unwitting role in my next medical adventure.

It was mid-August, 1993. We were in New Hampshire for a weekend of difficult challenge dancing. Since I was crazy enough to attempt dancing at this event the previous year - only a few weeks after Round 2 - I felt I had to redeem myself for that performance. Six months after returning to full-time work following Round 3, I was certainly feeling better.

We were having breakfast at the Nashua Marriott when it happened. I felt the wetness on the right side of my face near my "ex-ear" that I'd grown accustomed to - a reaction of sorts from having no parotid gland. However, this didn't feel like the usual sweat. I brought my fingers in front of my eyes - they were red with blood!

I wiped the right side of my head with my napkin - it was red. I told Ken to look up from his breakfast - and he noticed the red spots on my white polo shirt. I excused myself and raced to the nearest rest room.

I looked into the mirror and tried to make sense of what was happening. I tried to clean off the blood from my head as best I could, but I couldn't figure out where it was coming from. I went back to finish breakfast (as much as I dared at this point), then we headed back to the room so I could shower.

I felt as though I was Janet Leigh in the movie "Psycho" - only the knife was missing. All I could see was red mixed in with the clear water. It came down over my body. It streaked across the tiled wall. It was scary.

I toweled myself dry and headed back to the bed. My husband, who hates the sight of blood, was forced to try and figure out the source of all this grief. I really didn't want to go to an emergency room - I didn't want to have to explain why my right ear was missing before anyone would deal with the current problem. Fortunately, Ken had packed a box of bandages - and he used many of them to cover up what appeared to be the source of my bleeding. Whew! We were able to dance the rest of the day without any further incident; but not without some trepidation.

For the next few days, we seemed to keep the bleeding at bay - until I washed my hair. Then Ken would be pressed back into service - stopping the inevitable bleeding (which, fortunately, had lessened from that initial scare), then bandaging up the area. After a week, however, we concluded that nothing was improving except Ken's bandaging skills, so we made an appointment to see Dr. Sullivan on August 24, 1993.

The doctor took a look at the area and poked and prodded; then rebandaged it. He shook his head. "It sure looks different from the last time I saw it (November 1992)," he said. He recommended that I'd better get myself back to Mt. Sinai, as he felt the staff there would have a better idea of what to do about it than he would. I was also told that if I couldn't get an appointment with Dr. Biller, then I should try to see one of his associates "whose name begins with U."

I called Mt. Sinai the next morning. Sure enough, Dr. Biller was now specializing in throat cases, not ears. I was given an appointment with Dr. Urken. So we got the recommended letter of the alphabet! I raced to the local library in search of the New York magazine article about New York's best doctors - the one that had Dr. Biller on the cover. I was pleased to discover Dr. Urken's name on this list too! It reduced the tension just a little bit.

We met Dr. Urken on August 31, 1993. Tall, trim, and soft-spoken (My sister later pronounced him "cute."), he reviewed my history and promptly gave me a needle biopsy. Then I was sent off for an emergency CT scan. By the end of the week, we had the news: Yet another recurrence.

Unlike the recurrences in the lungs, which seemed to be caught just as they were beginning to surface, we caught this one in the nick of time. This was a large tumor - a few centimeters - that not only broke through the skin (hence the bleeding), but also ate through the skull, just pressing against the brain without going in. Talk about pushing the envelope!

Dr. Urken rattled off a bunch of things related to what needed to be done - most of which made no sense to me at the time. (Some things hadn't changed.) However, I did understand that the next step was a visit to the neurosurgeon, Dr. Sen. We hung up the phone next to the bed, then sat and shook for several minutes wondering, "Now what?"

Ken's family insisted he call his cousin Louis, a neurosurgeon in Upstate New York, to find out what he know about Dr. Sen, if anything. Fortunately, the news was good. However, Louis did ask me whether I'd been experiencing headaches. Well... I never thought about it, but Ken did point out that I had been popping a lot of Tylenol tablets lately... could there be any connection?

I called Dr. Sullivan with the news. I'd had a needle biopsy in his office one evening in late summer, 1986 to determine whether there was a reason for some pain I was experiencing on the right side of my head, but it turned up negative. We didn't think much of it at the time - maybe we should have? The doctor told me that the only way it could've been caught sooner would've been by repeating the procedure periodically until we "hit pay dirt." I couldn't argue much with that logic...

Armed with our pile of papers (We were finally learning!), we saw Dr. Sen for the first time on September 8, 1993. A short, trim fellow with a friendly manner about him, he showed us the CT scans. These films gave us a whole new meaning to having "a hole in the head." Here's how to visualize what I saw: Draw a simple circle on a piece of paper - that represents the skull. Now, erase a segment of that circle - say, a 20-degree arc. That was the area taken up by the tumor. This was one film that made sense to me!

We showed him our stack of papers. He was especially interested in the records from my radiation therapy. "You don't know how valuable this information is," he told us. It turned out to be a major factor in determining the course of my treatment. Apparently, the area of my head that had been radiated all those years ago couldn't handle many more rads (units).

Dr. Sen then explained what would probably happen (once he confirmed things with Dr. Urken): He would "peel off" the tumor, then insert a plate to cover the area of the skull now occupied by the tumor. (We joked that the plate was plastic so I could go through metal detectors at airports.) Then, Dr. Urken (whose specialty is reconstructive surgery.) would come in and graft some skin onto my head, then "rotate" the scalp. There would be follow-up surgery some months later to "undo" the scalp rotation. "For brain surgery, this should be a piece of cake," he concluded.

Gee, he seemed awfully upbeat! The doctor did warn me, though, that there could be some minor side effects; since "we don't know what every cell in the brain does." I would be placed on anti-seizure medication (Dilantin) for a few months following the surgery as a precaution. I was told that my memory might be impacted. "You may not be quite as sharp," he warned. Ken interpreted this to mean that I'd probably forget a square dance call. I imagined that information retrieval from the "Storehouse of Misinformation" may be delayed a bit.

I then spit out my list of questions: How long would the surgery take? How long would I need to be in the hospital? When could I go back to work? And, to further demonstrate my perverse set of priorities, could I travel to San Francisco with Ken in December? (Ken had signed up for a conference, and I had the requisite vacation time to use up.)

The answers seemed encouraging: A few hours of surgery (How could it possibly be worse than the 6-and-a-half I endured in '81?). A 2-week stay in the hospital. About 6 weeks at home. San Francisco? "Sure - go have a good time," he said. "Better than New Jersey."

We left feeling a little relieved, in spite of what we had to look forward to. I felt even more encouragement a few weeks later, when, during Rosh Hashanah services (which, needless to say, had special meaning that year), I discussed my situation with a former Rutgers classmate who was now an ENT. It turned out that he knew Dr. Urken - and promptly assured me that I was in good hands.

I had a wild time getting ready for this round of surgery. I had started a new job only a few months earlier. A co-worker left on disability two weeks before I was scheduled for surgery, and I inherited a project of his that was due just before I had to leave. As described the scenario to a friend via e-mail:

Just as I was struggling to get an appointment at Bayshore for a pulmonary function test (to make the neurosurgeon happy), who should call late last Thursday but the physician's assistant at Hahnemann, wondering how things were going (perhaps they finally faxed the reports to Mt. Sinai I requested a few weeks ago?). After I told him, I got a response of, "Surely you're going to see Dr. Brady before you have surgery?" So now, when do I squeeze HIM in - with Bayshore (not only the test but retrieving the last CT scan to take to Hahnemann), Tuesday's trip to the ENT at Mt. Sinai, work project that had to be ready for handoff for someone else to complete duplicating/distribution before leaving for the holiday (Yom Kippur), AND the holiday itself??? Not to mention getting out of jury duty; scheduled to begin Monday 9/20...

 

Well... I got an appointment to Hahnemann for Monday morning, figuring I'll come to the office (with Ken) sometime in the afternoon - so I can complete an outline for a presentation I won't be able to give in person Tuesday. Called the courthouse and got out of jury duty (Something good has come of all this! I figured telling people you're about to have brain surgery should get me somewhere...). Then there was Bayshore - the machine was down, not to be repaired before Monday (9/13). Finally got thru Wed. morning - machine got fixed Tues., but the new phone system (by Sprint) blocked my office number, so no one could contact me for an appointment. Could I come in at 1? Somehow, I managed to get my part of the project completed by 11 a.m., so I could get out by noon. At least the test went well (first time the technician actually told me things looked good!). Whew!

I entered Mt. Sinai on October 13, 1993. The place had changed tremendously in 12 years! The Hausman Pavilion was gone; replaced by a stunning atrium. The underground corridors, though, were as confusing as ever. I was placed in a room overlooking the George Washington Bridge. The lights looked impressive in the dark, clear, evening.

A parade of doctors and nurses came through the room to lend their unique perspectives on what I had to look forward to. I had finally come to grips with the term "brain tumor" being associated with my case. Ken had stumbled upon an internet mailing list devoted to brain tumor support around this time. He discovered that, technically speaking, any tumor that involved brain cells could be classified as a "brain tumor." Here we go again: I'd gone from "cancer in the lungs, but not lung cancer" to "tumor on the brain, but not brain tumor." Sheesh.

Eventually, Dr. Sen and Dr. Urken each stopped by to answer some of my final questions. Ken spent the night in a tiny (albeit expensive - even at "hospital" rates) hotel room a few blocks from the hospital.

Surgery took place the next day. As Ken summarized it for the internet list we referred to as The Sick List (in part):

Hi All,

 

Helena had her surgery today (10/14/93) and came through very well. She was taken down (actually across) at 7:00 a.m. (I got to the hospital at 6:30 a.m.). I was allowed to accompany her to the holding area before she was taken to surgery. Surgery was scheduled to begin at 8:00 a.m. We finally saw the neurosurgeon at about 3:30 p.m. and he said that he was able to remove the whole tumor and they couldn't find anymore cancer cells in the vicinity. (yay!:-) ) The other surgeon who did the reconstruction came to see us at about 5:00 p.m. and said Helena did fine. I finally got to see her at 6:00 p.m. while she was still in the recovery toom while she was waiting for a bed in the surgical ICU. She will probably be in the ICU for about one day and then will be moved to a normal room on Saturday.

I usually don't have any pre-conceived notions over how long surgery will take, or how I'm going to look/feel when it's over. This time around, I did ask - and Dr. Sen informed me that I'd wake up with my head bandaged up. Armed with this little hint, I now only had two thoughts as I entered this unchartered territory:

  1. Since the 1981 surgery took 6-and-a-half hours, I figured anything less would be amazing.
  2. As long as I didn't have to awaken with a breathing tube in my throat, I'd be happy. That unpleasant memory of Round 3 still lingered.

As it turned out, it was the anesthesiologist who best estimated the time I'd "be under" for the operation. You can imagine how happy I was to open my eyes at 4:45 p.m. (so the staff informed me) to see the last of that dreaded breathing tube being pulled from my throat!

Meanwhile, there was the matter of keeping everyone in the waiting area occupied. Of course, after three lung surgeries, Ken and our respective families had become all too familiar with the "routine." However, this time, the venue, doctors, and circumstances had changed. Since Ken now carried a beeper for work, he told me he had contemplated giving the hospital staff its number. This way, he could be called if he decided to take long walks in Central Park (across the street from the hospital) - and escape the constant barrage of anxious questions. ("Why don't you ask how she's doing? How much longer?")

No, Ken didn't walk away this time. For one thing, Mt. Sinai had a lovely waiting area in the atrium where the Hausman Pavilion once stood - quite a contrast to the tiny room everyone grew to hate at Bayshore. My husband also had something else to keep him occupied: our new laptop computer. I got the idea for this purchase from reading postings from Cancer Forum members stuck in "the slammer" (hospital). Also, since I was now using an internet service provider called Panix that was based in New York City, I thought having a computer in the hospital would be useful for keeping in touch with friends.

We purchased our Toshiba Satellite 1900 a week or so before I entered the hospital. Now, during my surgery, Ken could pass the time exploring some of the free software that came with the machine; being the "old-fashioned hacker" he is (before hacker became a bad name). In the end, he played "a LOT" of electronic Solitaire.

Things became interesting in the waiting area once Dr. Sen emerged from the OR. Ken doesn't have the best memory for linking names with faces. (He often jokes it's one of the reasons he married me, as I'm usually pretty good at this.) Since he'd met Dr. Sen only once - when the doctor was dressed in a business suit - he couldn't recognize the gentleman in the surgical greens who came over to tell him how my operation was going at that point.

"But I want to hear it from the doctor," Ken pleaded.

"I AM the doctor!" Dr. Sen replied. Oops.

Fortunately, Dr. Urken's appearance a few hours later went much more smoothly.

By about 6 p.m., I was able to see Ken, my mother, and my sister in the Recovery Room. I guess I was a bit paranoid about being coherent and "sharp" following surgery. Ken later told me, "they couldn't shut you up in there." Actually, my mouth was very dry - much more so than usual - as I came out of anesthesia, so I kept begging and begging for ice chips.

It took a few hours, but late that night, I was finally moved to the Surgical Intensive Care Unit (ICU). Of course, it was dark (save for what little light there was illuminating my bed in the room), and I didn't have my glasses, so I couldn't see very much. However, they did assign a gorgeous young blond Swede (from Stockholm, no less) named Henrik to watch over me - I never did find out whether he was a medical student or a resident (I imagine the latter). All I could think of afterwards was telling my sister, "If you thought Dr. Urken was cute, you missed Henrik." I got through a fairly uneventful night, save for more begging for ice chips or lemon-flavored swabs - anything with moisture.

Friday morning arrived, and with it came Ken and my brother (who flew up from Florida). I got my glasses back, and I could watch some TV. The medical personnel came in and out to do whatever they had to do to me. I had two teams dealing with me: The ENT Team and the Neurosurgery Team. Eventually, I began to wonder whether I should've kept a scorecard handy - each always wanted to know what the other was doing or saying to me. I began to feel my way underneath the bandage around my head. I felt a tiny rubber band surrounding a small section of hair. "OK," I thought. "They sectioned my hair for the surgery." I can't say I was very surprised...

Alas, by late in the afternoon, all those ice chips finally got even with me, and I began to throw up - just enough to become a nuisance. In spite of all that, I was moved around 6 p.m. to the "Step Down Room" - an intermediate stop before eventually moving to a "real" room. I managed to "announce" my arrival with yet another bout of nausea - fortunately, that turned out to be the last one.

The Step Down Room was aptly named, I thought. It was probably the most depressing place I stayed in during this go-round - not quite as bad as Hausman, but hardly pleasant. There were six beds, of which three were occupied - one by an old woman who constantly kept yelling for a particular nurse. At least there was a TV over the bed to help keep my mind off things (as much as one can expect at 5 a.m. on a Saturday). Dr. Urken eventually stopped by and said I looked much too well to stay there. "We'll get you out real quick," he said. Not quickly enough, though - I spent all day Saturday there too.

On Sunday morning, I was finally deemed strong enough to attempt to get out of bed. My first walking test was negotiating the 20 feet (or so) to the lavatory - amazing what can feel good after being confined to bed! I finally got into a real room that afternoon. I got the "window" spot, overlooking Madison Avenue. I could watch Metro North trains move along the elevated tracks in the distance; and there was another bridge nearby that added to my view. Later in the week, I was treated to some lovely sunrises.

Reality slapped me on Monday morning after the bandage was removed from my head. No, I didn't look - I didn't have to. The cleaning lady came in, took one glance at me - and began moaning all sorts of gospel-sounding things. I felt around my head - I had assumed my hair was sectioned from my earlier "investigation," but I didn't expect to feel braids! My head was now a combination of Sinead O'Connor (shaved on the right side, where all the "work" had been done) and Farina from "The Little Rascals" (all those braids). To "top" things off, thanks to the scalp rotation, I'd become something of an "off-centered Conehead." (Want to see what that's like? Take a piece of fabric from your sleeve between two fingers and twist it.)

I called Ken, who was now working in Lower Manhattan. "Before you come here, you will stop by Woolworth's in the World Trade Center," I instructed. "You will pick up a wide-toothed comb and a turban. I've just grossed out the cleaning lady." I'm sure this thrilled him to no end.

Ken arrived later that morning, and began to try and untangle my hair. This became somewhat amusing (After awhile, all you can do is laugh!): More than once, he managed to "untangle" hair that wasn't attached to anything! In preparing me for surgery, they must have cut hair without moving it away. "Oh well," I mused. "They're surgeons - not beauticians."

Once I was made to look a little more presentable, it was time for what became the morning constitutional - a walk around the floor. It felt good to finally be able to move around like a normal human being (albeit slowly)! The nurses eventually got wise to this routine - they knew when to expect Ken to show up, and that we'd take a walk when he arrived.

On Tuesday, Ken brought the laptop to the hospital. Although he figured out how to set it up, Panix wouldn't cooperate. You see, that was the week the internet service provider experienced a major security breach. (News of this even made the Wall Street Journal!) As a result, I wasn't able to access that account for another three days. However, I could nominally keep up with co-workers via ATTmail; and I could send greetings to the Cancer Forum via CompuServe. My "toy" also seemed to attract several curious doctors and residents to my room.

I began to adapt as best I could to the hospital schedule. The first resident stopped by to examine the dressing on my right leg around 4:40 a.m. (One reason the surgery took so long was because the surgeons had attempted to graft skin from my thigh onto my head, but it didn't work. They needed to use "donor skin" to complete the procedure.) I usually gave Ken his first "wake-up call" around 5; with a follow-up a half-hour later. (He usually took a 6:30 a.m. train to NY.) Fortunately, Mt. Sinai keeps patient room phones turned on all day and night (unlike Bayshore, which had limited hours)! I often used the laptop during the early morning hours as well. The doctors usually began visiting around 6 or so. Since our alarm normally goes off at 4:30 a.m. (in hopes we get going by 5), this didn't bother me very much.

What did bother me, though, were the late breakfasts - alas, I didn't find out until I was nearly ready to go home that I could've requested an early tray. Having to wait until 9 when I was used to eating between 5:30 and 6 a.m. was rough! To compensate, I ordered an extra roll and juice with dinner and stashed them away in the nightstand for noshing after the doctors were through with their early morning visits. My weight still hasn't quite recovered from this - and the yummy brownies from the hospital's kosher kitchen didn't help matters any! (And I usually lost 5 pounds when I had lung surgeries!)

Recovery seemed to be going quite well - until Friday. The area of the thigh affected by the failed skin graft developed an infection. Putting weight on that leg became a little painful. I was placed on intravenous antibiotics.

In spite of this, Dr. Urken and The ENT Team marched in early Saturday morning to inform me that I could go home. A visiting nurse had been ordered for me anyway, so he didn't see the infection on my leg as a deterrent. I called Ken with the good news.

The euphoria was short-lived. About 20 minutes before Ken arrived - while The ENT Team was completing the paperwork for my discharge - The Neurosurgery Team stepped in. They weren't comfortable with my leaving just yet - especially since Dr. Sen had been away all week following my operation. I finally broke down for the first time. I spent the rest of the weekend with more bandages and antibiotics.

Dr. Sen finally came back to see me on Monday and cleared me for discharge. I left the hospital on Tuesday, October 26, 1993.

It was time to make adjustments once again. The area where my glasses rested appeared to be the point where the original skin graft from 1981 met the new graft, so they had to be adjusted to sit on my head properly. Once again, my eyes were "going out to lunch." Although my energy level was compartively high - probably attributed to the constant exercising I managed to get in before surgery (I was able to complete my entire workout for the first time in months only a few weeks before the surgery.) - my thigh occasionally hurt when I tried to walk. As my thigh began to heal, it began to itch uncontrollably - one could almost set an alarm for 2 a.m., when I'd awaken in agony.

Perhaps the hardest adjustment was dealing with a visiting nurse, whose main purpose was to keep an eye on the leg infection. Her scheduled arrival was 10 a.m. - that was usually the time that I had taken my morning nap while recuperating from the earlier operations. Fortunately, my leg "behaved," so she only stuck around for the 5 days my insurance would cover.

It was also time to get a wig. Although I've been accused of having several talents, hair is NOT one of them! However, I could handle the turbans I brought home from the hospital only so much. I managed to find a helpful person in a local beauty supply place, who was able to find me something suitable. As I described it to a friend in e-mail (in part):

I got a wig...and we're slowly making friends. I have absolutely no talent for hair, so pinning existing hair up so I can get the darn thing on is something of a challenge. On the other hand, I may as well get used to it - I'll probably have to deal with it until summer (but hopefully no longer than that).

 

The best thing I can say about the wig is that it helps the eyeglass situation a bit. I can wedge that right earpiece that's giving me trouble thru some of the elastic mesh and my glasses are almost straight.

It wasn't long before I needed to return to New York for check-ups. As I e-mailed The Sick List (in part):

November 2, 1993:

 

Greetings - from the patient this time!

 

We just got back from the 1st post-op visit with the ENT, exactly one week after being discharged. He took out the last of the stitches from my head, removed the dressing from the section of thigh used for the skin graft, and generally pronounced me ok. :-)

 

In other words, I can continue to progress toward normalcy. First on the agenda (ok, later tonite) is a "real" bath. "Real" hairwashing to eventually follow - gotta keep Ken in practice! ;-) Even more amazingly (to me), the ENT doesn't want to see me again til after the first of the year. So, the next phase - that is, adjustment of the reconstruction to the head - will probably take place during the 2nd half of January.

 

Next on the post-op agenda will be a visit to the neurosurgeon on Wed., Nov. 17. Hopefully he'll be equally pleased and I'll be able to return to work as planned (by me) by Thanksgiving.

 

November 18, 1993:

 

Good Morning!

 

Saw the neurosurgeon yesterday. He's very happy with the way things are going, and has allowed me to begin returning to work whenever I feel ready to do so. I'll probably make my first attempt Monday - get in around the usual time, then leave after lunch to sleep; if previous events are any indication. Hey, gotta start somewhere.

During that visit with Dr. Sen, I was taken off Dilantin - months earlier than expected. Even though I was taken off medication, I wasn't 100 percent yet - as I described in e-mail: (in part)

I'm beginning to discover the minor neurological blips I was warned might happen: Balance is sometimes awry (round dancing made that known), sentences sometimes get derailed, reaction time on the dance floor is just a tad off. However, it doesn't appear obvious to anyone else but me - and it really is just a little. The neurosurgeon has assured me that this will eventually disappear.

Dr. Sen eventually discharged me in January, 1994.

I returned to part-time work on Monday, November 22, 1993 so I could work 3 half-days before Thanksgiving. I worked 4 more half-days the following week - and then it was off to San Francisco.

Although this trip turned out to be a much-needed break for both of us, in retrospect, it may not have been one of my wisest moves. My stamina hadn't quite returned yet - and I didn't help matters any. I ended up going to 3 square dance workshops - in addition to the appearance at Stanford Quads with Ken we had planned in advance. (After I attended the first workshop, dancers offered me rides and/or mass transit escorts to the other two. How could I refuse?) As a "bonus," Roger (who once sneaked in to see me in ICU at Bayshore) and his fiance Susan - who were now living in Portland, OR - flew down to spend a day with me hiking around Fisherman's Wharf and Ghiradelli Square. (Ken managed to take enough time off from sessions to join us for dinner.) Needless to say, by the time Ken's conference ended on Friday, I was exhausted (much to his chagrin). Nevertheless, we did make our first trip to the Wine Country (Sonoma) on Saturday - and learned enough to know we needed to return someday when I was healthier!

I went back to full-time status after returning from San Francisco - and promptly landed on a major project that later became "AT&T True USA Savings." I felt AT&T got back all the time I spent on disability within a week.

At the end of 1993, I was still desperately trying to get along with that wig. In an effort to obtain some free advice, I decided to attend a "Look Good, Feel Better" program sponsored by the local chapter of the American Cancer Society. As I posted some time later to the Cancer Forum (in part):

Threre were four of us in the group. The other three were in various stages of hair loss from chemo. Although I wasn't getting either chemo or radiation, I had enough "war stories" of my own to fit in :-)

 

The session was led by an ACS rep, along with a local beautician (who handled wig stuff) and a Mary Kay representative (who handled skin care and maekeup). Learned a bit, enjoyed an afternoon of mutual discussion, and came home with a bag of sample cosmetics and some used turbans from the donation heap.

 

If you don't attend an in-person support group, or don't necessarily feel the need for a long-term involvement with one, this might fill the bill. I'd recommend it to others.

If nothing else, the wig and I became less adversarial. And, I'm still using some of the makeup tips I picked up that afternoon.

"Mission Impossible"

I finally scheduled my last surgery (to this point) for St. Patrick's Day, March 17, 1994. I told folks the surgeons would be dressed for the occasion ("Wearing of the Green" anybody?). For once, this was truly Same Day Surgery! For this reason, we decided that the parents didn't need to be around.

As Ken posted to the Sick List, in a message titled "The Latest Round":

Hi All,

 

In case some of you didn't know, Helena needed some minor surgery to, as she has said, "straighten out her head." Actually it was needed to smooth out a bit of scalp that was clumped on top of her head after the last surgery.

 

She had the surgery this morning, and true to the doctors' word, was able to come home this afternoon. The surgery went fine and we'll know how much more hair coverage she'll have when I remove the bandages tomorrow. She will be staying home tomorrow and will go back to work either Monday or Tuesday.

 

She will probably follow-up on my message when she feels up to it.

Our frequent joke before this surgery was that "straightening out my head" was "Mission Impossible." Since then, we've often referrerd to this operation as "the head fix."

March 17 turned out to be Storm #17 of that infamous winter of 1994. In spite of oversleeping, and the weather, we made it to Mt. Sinai by 6:40 a.m. I was taken for surgery within the hour. Dr. Urken woke Ken up (literally!) by 9:30 a.m. I was able to go home by 12:45 p.m. This was amazing!

As I reported in e-mail the next day (in part):

Well, things are getting better: Breakfast has managed to stay down so far (nothing much wanted to last night), this eyeglass band is enabling me to see well enough to function for reading and computers, and I can get around pretty well around the house.

 

Next challenge is for Ken to get enough nerve to remove this head wrap. I think I've finally given him a reason to get it over with: the sooner he does so, the sooner I can call the doctor to make an appointment to get the stitches out in 2 wks. You see, they taped over my one ear, making eyeglass wearing and phone use more challenging than usual.

 

The next steps, in brief: No wig-wearing until stitches come out, no hair-washing until Monday at the earliest; otherwise not much in terms of restrictions. Can't complain.

Ken was able to find a cheap athletic band for my glasses. Although I initially thought this could be the solution to my now long-standing problem with the crooked glasses, I soon discovered that this only works on "smooth" surfaces - like bandaged areas. Once the bandage was removed from my head, I never could adjust the thing properly. Either it was too tight to be comfortable or too loose to be useful. It would be some time before I finally faced the "obvious" solution.

Even though this last operation was comparatively minor, it still took something out of me. Of course, I didn't help matters any: I spent the following Monday afternoon participating in a 5-hour training document review via speakerphone in the bedroom. Needless to say, I wound up taking an extra day off to recuperate from the effects of that escapade!

Dr. Urken removed the stitches on March 29, 1994. I never thought I'd be so happy to return to the wig! Now I could go back to workouts in the fitness center to (once again!) regain my stamina. As my hair began to grow, I could begin to contemplate my next hurdle: eliminating the wig altogether. I eventually decided that I would conduct an "experiment" at the National Advanced & Challenge Convention that June in Virginia Beach: I would go around without any headcoverings during the day. If I didn't gross out too many people, I would return to work following vacation "in real hair," as I told my co-workers.

The experiment was successful; and I formally got rid of the wig in July, 1994 - just in time for the hot summer!

Although my life was finally beginning to return to normal, some other concerns remained (aside from the periodic CT scans). For one thing, there was the matter of my vision - again. Although the "head fix" enabled me to wear my hair short for the first time in many years, it also caused my glasses to sit perpetually slanted on my nose. Because the center of my right eye no longer viewed the center of its eyeglass lens properly, I suffered from frequent headaches - again. I asked my eye doctor about this during my regular checkup in June, 1995. He told me that if I needed it, I could have the lens of the eyeglasses "rotated" to accommodate the slant.

With that piece of information tucked away, I decided that it was time to ask Dr. Urken whether any progress had been made in ear prostheses since I lost the ear in 1981. Back then, I had been told that plastic surgery was too involved for the scant gain it would produce. If I wanted a "fake ear," I was told then that I could glue something on. I referred to this solution as "Mr. Spock Ears."

When I asked Dr. Urken about this at my July 1995 checkup, he immediately referred me to a specialist in this area who was about to join his practice (what timing!). As I posted to the Cancer Forum (in part):

Anyway, after a brief discussion of my case (a few minutes on the phone with the doc while we were madly taxiing there, followed by time with me), he described his proposal for an ear prosthesis. While a few steps up from the "Spock ears" I recall hearing about years ago, it's a solution that doesn't really appeal to me. Given how much I hated dealing with a wig for 7 months, I can't see being thrilled with thoughts of gluing, shaving - and replacing stuff every 2-3 years. Plus, the doc didn't seem totally assured that this was THE solution for me.

 

So, after some discussion over lunch, Ken & I decided that we'll try to make time to see the optician and have the lenses of my glasses reground - they call it "rotating" in the trade, I understand.

The procedure leading to the "proposed solution" involved a series of about a dozen outpatient visits to eventually create a mold of this prosthesis. Since the glue used with the prosthesis is water-soluable - and given the sweat I usually experience on that side due to my missing parotid gland - I wasn't thrilled with the idea of going from no ear to one that could "travel" around my head.

Unfortunately, due to my overload at work, it took another year before I finally had the time to return to the optician for the alternate solution. By then, my headaches were worsening, so I needed to have my eyes checked first. Although the doctor was willing to have me try bifocals in spite of the supposed atrophied muscles in the right eye, the optician took one look at the perscription and my history and promptly vetoed that bright (!) idea. Yes folks, it was back to "dueling eyeglasses." Much as I despise going around with two pairs of glasses (must be revenge from hating to clean my glasses when I was little!), it didn't take long for me to notice the difference. The headaches promptly disappeared!

Modified Date
2000-03-04
The Puzzlement (1995 - 1998)

The Puzzlement

And so life started to return to something resembling normalcy after I got rid of that wig in 1994. I began to regain enough stamina to dance more vigorously than I'd been able to do while in the midst of all my surgeries. Checkups became almost a routine event - we told folks that "Just like there's Rabbit Season, Duck Season and Elmer Season - we have Doctor Season!" However, those checkups came at less frequent interevals - as little as once or twice a year; which made us feel pretty good about things.

And it was a good thing, too - because by January, 1996, AT&T changed its "high option" medical plan to a managed care system. In my case, this meant US Healthcare (now Aetna/US Healthcare). I could no longer get my CT scans done at the hospitals I'd been using - heck, when you're talking a difference between a $10 co-payment and hundreds of dollars, isn't it a no-brainer? I was forced to adjust to a new routine as far as scans and checkups were concerned - and this wasn't an easy process for me.

I managed to squeeze in one last set of scans (lungs at Bayshore, head at Mt. Sinai) in December, 1995 - and fortunately, Dr. Solis pronounced me improved enough that I didn't have to get another lung scan for a whole year. Alas, that only delayed the inevitable...

The Primary Care Provider (PCP) we selected - a local clinic Ken and I had been using for years whenever we had medical concerns that didn't require a specialist - sent me to a radiology place I'll call Warren. I had my first CT scan there in preparation for my checkup with Dr. Urken in July, 1996. A few months later, Dr. Brady told me I didn't have to see him and the gang at Hahnemann for another year either. Then, I switched jobs within AT&T in October, 1996. I didn't think there was much to be concerned about...

My next pair of CT scans took place in Warren on a snowy afternoon in early January, 1997. I should've known things were going to get "interesting" when I received a panic call from Dr. Solis' office the day before my scheduled appointment asking me whether I had gotten my scan. After reminding the assistant that I could no longer have my scans at Bayshore, I called Warren and asked them to kindly fax the reports to Dr. Solis, as I had an appointment the next morning.

The weather was just as bad that Thursday morning as I trudged down to Hazlet. When I finally saw the doctor, he greeted me with, "Well, your head's OK - but that doesn't tell me anything." Turned out that Warren sent him the report from July's head scan! Another call...another fax... then cause for concern: The report said something about "multiple nodules in both lungs...less than 1 cm." Dr. Solis found this hard to believe. We decided that I'd go up to Warren and retrieve the films myself, then bring them down to Dr. Solis so he can review them with the radiologists at Bayshore - after all, those folks were familiar with my case. With a shakiness inside, I headed to the office in Piscataway to break the news to Ken.... As I drove, I decided that I'd take the rest of the day off to do all the necessary running around. Fortunately, the weather had improved by then!

Needless to say, Ken didn't take the news very well. After all, we thought it was all over! After sending some e-mail to the Sick List and making a few phone calls, I headed back to the car to get the films. I didn't think I'd taken so many laps up and down Route 287 and the Garden State Parkway since we moved to Hillsborough in 1987!

It was a rough evening sweating this one out; full of emotions and analysis. After some discussion with my sister, I eventually concluded that either the folks at Warren had mistakenly determined that my numerous batches of scar tissue were nodules - or I had simply gotten yet another test at the "right time" and we had something to worry about.

Dr. Solis called me at the office at lunchtime the next day. He said that most of the problems were "semantic" - yes, it was scar tissue. But he also pointed out that there was "one suspicious spot" - less than half a centimeter - in the left lung. However, he said it was "too small to deal with at this time," so he recommended repeating the scan in six months and seeing whether there would be any change. I spent the next several months feeling as though I was in limbo - not a very comfortable feeling.

While I was waiting for summer, there was the matter of dealing with my PCP. I knew that I didn't want to have another scan done at Warren, so I asked for alternatives. One minute they said my plan would let me go anywhere; the next minute I got the opposite opinion. So, in June, I marched right into the office, flashed my card and asked one more time. They took out the book and recommended a place in Franklin - and I promptly made an appointment for the Tuesday after we returned form vacation.

Still not used to the referral routine, I didn't get around to asking for one until the day before the appointment - and then the PCP said no. After I hemmed and hawed, they placed me under appeal - but I still had to reschedule the appointment. In the end, I got to go where I wanted.

By this time, I began to feel quite agitated between the wait since January and the craziness surrounding this scan. Although I didn't think it was like me to be this way, Ken pointed out the my behavior was reminiscent of November, 1991; when the spots in the lungs were first discovered. Back then, though, the stress was due to Fear of the Unknown; now I began to think it was more of a negative reaction to change. For several years, there had been a routine to this: I visited the same places, (usually) met the same people, and often heard and/or uttered the same comments. (The CT technician at Bayshore often greeted me with, "So, did you bring any veins with you today???" - no doubt anticipating yet another "challenge" in finding a suitable vein for injecting the contrast dye. (Human pin cushion, anybody?)

Perhaps it had all become too easy... Now, I began to tell folks that "managed care has managed to drive me crazy." I just couldn't get the hang of this stuff; and I suppose the effects of the added stress I experienced in January hadn't completely worn off. Ken was right: I had allowed myself to get too worked up over it all. Although I was really trying to calm down, I guess it was all just really trying...

Well, after the pleasant experience I had getting the CT scan, the resulting report didn't seem to have great news. After trying to make sense of the document I picked up a few days after the exam, I concluded that radiologists must be trained to write vague reports. I walked into Dr. Solis' office pointing to his copy of the report and asked, "Does that piece of paper have good news or bad news?" When I saw him sitting down, I didn't think it would be good news. (Deep down, I had already considered walking into the doctor's office and saying, "OK, how many spots - and when do we get them out?")

Dr. Solis told me there were four spots - two in each lung. But he was (justifiably) concerned that these nodules continued to pop up even after three operations. So, he said he didn't want to operate until we got some more opinions - particularly from a medical oncologist. He agreed to call my PCP and work with them to find someone who US Healthcare would like - and off I went for my next checkup with Dr. Urken. (Yes, that very same day - last time I do that!) All I could think of as I headed to the car was, "What a puzzlement."

Fortunately, the checkup at Mt. Sinai went well - but Dr. Urken wanted his radiologists to review my lung scans. So, we sent those off the next day via overnight mail - and then we took off for a weekend in Portland, Oregon where we witnessed Roger's wedding. (Yes, that's the Roger who sneaked in to see me in the ICU at Bayshore during Round 1!)

We saw the oncologist on August 12, 1997. Although we didn't have to rent a U-Haul van, we thought she was pretty impressed with the wealth of stuff we brought with us! (scans, operating reports, radiation records...)

She basically confirmed several things for us: First, that we'd been doing "the right things" up to this point - surgery followed by radiation were considered the "classic" treatments for this stuff. Next, that chemo and radiation were not options: Chemo still doesn't offer enough benefits to be worth trying with this type of cancer. Radiation works best for localized tumors - not for four nodules scattered across both lungs (like me).

So, we were looking at surgery again - but what kind? Another video-assisted thorocotomy? Or good, old-fashioned chest surgery - open me up and get at everything in both lungs in one fell swoop?

The oncologist asked to take the scans and show them to some radiologists and thoracics in the area. Since she was affiliated with St. Peter's Hospital in New Brunswick, NJ - where video-assisted thorocotomy was pioneered - we felt this was a good move.

About a week or so later, we received her comments from the radiologists she saw. Apparently, there were three types of "things" going on in my lungs:

  1. "Old Stuff" - the scar tissue from the three previous surgeries.
  2. "Older Nodules" - tiny things (less than 1 cm) that apparently have been lurking around for awhile, but haven't changed any. Hmm....
  3. "New Nodules" - the four nodules that surfaced in July's scan.

We learned something new from this discussion: Spots may equal nodules - but may not necessarily equal tumors. (However, the pathology report from each of my previous surgeries indicated tumors in each case.) However, the oncologist didn't think there was anything going on that would be harmful in the short term, so she felt it would be best to wait six months, then get another scan. Gee, this sounded like 1991 all over again...

But I wasn't ready to end this segment just yet. I decided that I wanted to have a consultation with one of the thoracics she couldn't get in touch with. And so we met with the Chairman of the Thoracic Surgery Department at Robert Wood Johnson Hospital in New Brunswick on August 25, 1997. We learned even more that afternoon:

  1. We got a better idea why Dr. Solis was so hesitant to operate again: Apparently one isn't supposed to have more than three of these procedures in a single lifetime. Although it's possible to live with one lung, how much of each can be taken away while permitting the patient to continue to lead some semblance of a normal life?
  2. It appears that my own bodily defenses were keeping the disease in check - especially since there have been "no significant change" in the nodules.
  3. Finally, this doctor agreed that if I were to undergo another operation, it should be a "full court press": open me up and take everything out at once. He referred to this as a "clam shell procedure," where the incision is made from side-to-side, as opposed to vertically down the sternum. He recommended that I visit one of the thoracic surgeons at Memorial Sloan-Kettering Cancer Center to discuss this option if I so chose.

But before he could do anything else, he needed to see some more films. Alas, Mt. Sinai managed to lose the crucial January scan. So, I eventually concluded that I might as well wait until December, when I'd have my next scan. That way, the missing one wouldn't matter. And so I decided to try and enjoy the rest of 1997...

I had my next scans on December 26, 1997. (Earlier in the year, Dr. Urken promoted me to annual head scans, so this would be my first one since January '97.) Again the head scan came out fine, but the lung scan report caused more concern. Dr. Solis told me there were three distinct spots: Two in the left lung (including the infamous "suspicious spot" that started this "puzzlement.") and one in the right. The difference: The "suspicious spot" had grown, while the others became more defined.

The immediate recommendation was to visit Sloan-Kettering and meet with the Chief of the Thoracic Service. (After checking out this guy's biography on the web page several months earlier, I concluded that if anyone could tell us what's going on, it would be this fellow.) However, we discovered that Sloan-Kettering is not a US Healthcare participant. Upon further discussion with another AT&T employee who was under the same plan I was - yet was awaiting surgery at Sloan-Kettering - I learned that the key phrase was "we don't do it here." That is, if another hospital/physician could document that the only place for my surgery would be Sloan-Kettering, then I'd have a case for an appeal. And here we had yet another example of how "managed care was managing to make me crazy."

However, Dr. Solis did approve for me to go to Fox Chase Cancer Center in Philadelphia - a facility that US Healthcare considers "in-network." And so, I made an appointment for late January, 1998; at which time I'd be seeing quite a team of oncologists.

But preparing for this visit proved a little more challenging than expected. Just when we thought we had collected everything a medical professional could ever want, we discovered that Fox Chase wanted pathology slides! Off we went on another "Scavenger Hunt." Although we didn't win the NJ Lottery's $20 million Pick-6 for that week, we managed to "hit the jackpot" in pathology slides. Once folks stopped laughing at my requests for "artifacts," they actually managed (much to their own amazement!) to locate the "evidence" from all those biopsies and surgeries. (Keep in mind that we were going back as far as 1979!) And in something of a flashback to my traveling between Warren and Hazlet with the CT scan films the previous January, we wound up collecting these "treasures" on the worst day of the month: Each of us slogged through various forms of precipitation to the various hospitals that Friday - Ken to Mt. Sinai; yours truly to Riverview and Bayshore. Drip, drip. drip...

We made our first trip to Fox Chase on January 27, 1998. We saw a parade of doctors, including radiation oncologists and medical oncologists. (Alas, the appropriate surgical oncologist wasn't available.) We got a good look at the CT scans - with explanations. Yes, we did hear several things we'd heard before; such as chemo and radiation not being effective options. But we were reassured that although there had been changes in the spots over the previous six months, they were really miniscule.

In the end, we were told to expect "good old-fashioned" chest surgery - that is, cut me down the sternum, expose both lungs, and "pick out" all those lovely little nodules. We were warned that once the doctors got in there, they'd no doubt find more than just those three spots to remove - such is the nature of this stuff. On the brighter side, the doctors assured us that we could probably wait until July to have this done - at least we could have our vacation before we needed to deal with this stuff! Ah, the joys of a slow-growing cancer...

But we still needed to see the surgeon. And so we met Dr. Goldberg, the thoracic surgical oncologist, on February 26, 1998. He concluded that there was no advantage to going in and "cleaning out" both lungs at once - so we had two surgeries to look forward to! Since he felt the left lung "had more disease," that would be the first target. The right lung would be dealt with once things healed on the left side - and disability benefits recycled. And he eventually agreed that we could wait until July to have the operation - we could enjoy our vacation after all!

I underwent a finer CT scan (called a "spiral") in May, and on May 29, 1998 we met with Dr, Goldberg to schedule the surgery. Fortunately, he was taking his vacation at the same time we were, so we agreed to Tuesday, July 7, 1998 (Lucky 7s, anybody?). At that time, I finally asked the burning question: how many spots? The doctor answered matter-of-factly, "Oh, at least 10." Gulp!

Dr. Goldberg went on to describe the procedure, which seemed not unlike Round 3: They'd try to enter via the ribs, using one of the old incisions. (I could stand one less scar!) Then the doctors would do some "serious hunt, pick, and pluck" with wedge resections as needed. (That means cutting out pieces of lung - hopefully kept to a minimum.) Time of surgery was estimated at three hours; followed by 5- 7 days in the hospital, then 4-6 weeks home.

And so, after making all the necessary arrangements for pre-admission testing, we went off to prepare for yet another operation...

Modified Date
2000-03-04
The "Extra" Summer Vacation (1998)

The "Extra" Summer Vacation

We concluded that 1998 featured two summer vacations.

First was the "real" one - from June 16-29, when we really broke in the new car we had purchased about two months earlier. This vacation included The National Advanced & Challenge Square Dance Convention in Louisville, Kentucky; followed by The National Square Dance Convention in Charlotte, North Carolina. It was a pleasant two weeks away from home, work, and the "medical madness;" filled with lots of fun memories that would surely help us get through the uncertainty that was ahead.

And then there was the "enforced" vacation, which included my fourth lung surgery and all that went with it. After all, this operation would feature a change of scenery and a different cast of medical characters...

I took myself to Fox Chase for pre-admission testing on July 1, 1998. It was the first time that I made the 90-minute drive from home alone. For the most part, the tests went well. In addition, I was able to take advantage of the time to explore those parts of the hospital that I knew family members would need to know about for The Big Day (such as the waiting area and the cafeteria). For once, I showed up with a list of questions - and managed to get nearly all of them answered.

Surgery was scheduled for 8:30 a.m. on July 7. (My 7th operation - on July 7th. Lucky 7s indeed!) We arrived at Fox Chase at the appointed time of 6:30 a.m. I was taken to the OR at 8 a.m. The last thing I recall was being positioned to receive an epidural at 8:14 a.m. (Since I never had children, I was somewhat apprehensive of getting this - given the description of the procedure, I was only too happy to be "out" at that point.) I awoke in the Recovery Room around 12:30 p.m. or so and was moved to the ICU around 2 p.m. The ICU nurses told Ken that I looked better than most patients who've had this type of surgery. I guess I must've been doing something right!

Boy, these folks were right on the money as far as timing went! We had been told that it would be about 6 hours from the time Ken said good-bye to me as they took me to the OR until the time he could see me in the ICU. You do the math!

So, what happened? Looks like it was more than we bargained for: Dr. Goldberg told Ken he removed about 20 nodules from the area surrounding the left lung, the lung surface, and the interior of the lung. He also discovered that the cancer had migrated to the diaphragm, and he would up taking out a piece about the size of a quarter - that was a surprise! Although the doctor explained that he had removed as much of the disease as he could, he pointed out that there were probably still some microscopic cells left that he couldn't find and remove.

In addition, Dr. Goldberg told Ken that the right lung "has just about as much disease." So I guess we know what we have to look forward to in January '99.

One of the things Fox Chase prides itself on is pain management. My experience in the ICU was quite different from any of my previous surgeries. For one thing, I was in much less pain - that epidural seemed to work wonders for me. The moment I had dreaded from my previous surgeries - turning onto my side so the nurse could check my dressing - turned out to be a breeze. ("Hey, I did it!")

One thing didn't change: the need to begin breathing exercises immediately. This time, the respiratory therapist had an updated version of the machine with all the lights that I had used back in Round 1 at Bayshore. But this time, the pillow that I was supposed to use for my coughing was replaced by something much more fun: a small teddy bear named Sir Koff-A-Lot (later to be affectionately known as "Koffee"). Either way, these exercises seemed to go much more easily than I remembered.

I was also trying be extra careful about my intake of ice chips, after the unpleasant experience I had at Mt. Sinai five years earlier. Needless to say, I was surprised when my request for a refill on Wednesday morning was met with a response of "How about something more nutritious - like juice and crackers?" Imagine my glee when these stayed down with no problem! And to top things off, this little bit of progress was accompanied by my first escape from the bed onto a nearby chair.

Another difference in this hospital experience is that visiting hours in ICU are the same as in the rest of the hospital - and not restricted to family members. So, I was pleasantly surprised at lunchtime on Wednesday when my friend Barbara came to see me. And since she worked only a few minutes away from the hospital, she was able to visit me nearly every weekday at that time. Later that evening, my friend Arleen also came by; which enabled Ken to leave for home just a little earlier.

I was moved into a regular room on Thursday - just in time for the Jewish chaplain's weekly rounds. (I was greeted the next day by a volunteer representing the Philadelphia Board of Rabbis, which has a program of distributing challah and Kedem Grape Juice to all Jewish patients for Shabbos on Fridays.) Ken promptly brought the laptop and figured out how to connect it so I could access my America On Line account. The needlework bag arrived the next day.

Most of the tubes were removed on Friday - and by midnight, I was finally untethered and could make my first trip to the bathroom.

And I settled into a routine that I'm sure must have amused the medical staff, given all the "fun" stuff I had in the room: The stitching, the newspapers and magazines (My copy of People magazine that featured Barbra Streisand's wedding to James Brolin was especially popular with the night nurses.), and especially the laptop computer.

Unfortunately, not everything went that smoothly. One area in the upper lobe was stubborn to heal, causing a small air leak near the incision. On Tuesday, the doctors rolled in a more powerful suction device (affectionately known as "the little green monster") in an effort to speed up the healing. As I had told one of the residents, I really wanted to get out by the end of the week - I had plans; specifically my 25th high school class reunion.

Dr. Goldberg literally bounced in on Wednesday, having gotten wind of this conversation. His first words to me were, "Why didn't you tell me? We have ways..." Well, I really didn't think it was going to be an issue...

I was finally discharged on Friday, July 17, with a little "appendage" called a Heimlich Valve dangling from my left side. This was a 7-inch piece of rubber tubing that's flattened at one end and enclosed in a hard, clear plastic case. (It "flutters" when it's working, hence its alternate name of "flutter valve.") It's designed to remove air or drainage from the space bewteen the lungs and the chest wall. Yes, this was developed by the same man who gave us the Heimlich Maneuver - I eventually learned that he came up with this device after inventing the Maneuver.

I was also ordered to have a visiting nurse for two "instructional visits" - to show Ken how to change my dressing. She made her first appearance the next morning to demonstrate - then made Ken do it himself two days later. Given how much Ken hates the mere sight of blood this was no easy thing for him to stomach!

But I managed to make it down to Toms River for my high school reunion. The top of my 2-piece outfit just managed to cover the "appendage," and I simply placed a plastic bag over the valve to catch the drainage so I wouldn't leave a "trail" behind. Although this was probably not one of my saner moves, I figured it was feasible: The party was being held only a few minutes away from the nearest hospital. We were only going to be no more than 5 or 10 minutes away from the parents. And, I knew there would be at least one nurse among my classmates in attendance. (As it turned out, there were two nurses and a doctor in attendance.) So, if I wasn't going to be stuck in the hospital, how couldn't I have gone???

We spent the night at Ken's parents' home in Toms River, and visited my mother in Lakewood on the way home the next day, so she could change my dressing (and Ken wouldn't have to!).

I had my first post-op checkup the following Thursday. At that time Dr. Goldberg removed the valve, leaving Ken ecstatic at the thought of no longer having to change that dressing. We were also surprised to learn that the doctor didn't want to see us again for three months. When I asked the fateful question, "When can I go back to work?" he replied, "Whenever you feel you're ready." Gee...

Now came the "fun" of recuperating- a pretty lonely process, as it turned out. It was difficult for me to accept the fact that since the surgery was more extensive than any of my previous ones, it would take that much longer to recover. (Let alone the fact that I was now five years older than I was the last time I underwent surgery.) I became tired much more easily. The effect of the surgery on my diaphragm became apparent whenever I yawned or sneezed (and once when I laughed much too hard!). Because I was on percoset for pain, I wasn't allowed to drive. I finally got behind the wheel about a month after the operation - and even a short trip to the store left me exhausted by the time I came home.

As it turned out, I wound up going back to work a little later than planned. I had decided I didn't want to return until I had my summer checkup at Mt. Sinai - Dr. Urken had said I could wait a month or two after the surgery to see him. (I'd been seeing him in July.) Since Dr. Urken was going to be out of the office the week I wanted to see him, I decided (for once) to err on the side of caution and see him later rather than sooner.

I returned to work on August 31, 1998. The folks in AT&T's Disability Management group had penciled me in for two weeks of 4-hour days, followed by two weeks of 6-hour days. It didn't take long for me to realize I needed to be serious about these hours - my body still needed its rest.

However, returning to work featured some additional "challenges" I hadn't expected. The parking lot nearest the building had been redesigned two weeks before I got back - with more spaces opened to everyone, that were often filled by 7 a.m. Although I had spoken to the folks in Security before leaving for surgery about obtaining permission to park in the "executive" section, I returned to find far fewer spaces in that section and that they'd been moved to a location that was much too far for me to walk comfortably on a warm summer's morning. I was often exhausted by the time I reached my desk on the third floor. And to add insult to injury, the elevators in my area of the building were being "modernized" - and there were more than a few moments when the elevator not being worked on was also out of order. It was no fun begging the folks in Security to kindly operate the frieght elevator for me to return to my desk from the cafeteria - and yes, there were several times when I was unsuccessful (and endured a few inedible lunches as a result of meals getting cold by the time I finally got back to my desk). Suddenly that half-mile hike to the cafeteria in Basking Ridge (aka my source of "exercise" following my previous lung surgeries in 1992-93) seemed so much easier to deal with...

In the end, I tried to arrive at the office in time for the overnight guard to go off-duty - so I could get his close parking space. (Sometimes this worked, sometimes, it didn't.) And after speaking to a representative from Human Resources, I finally broke down and requested the appropriate forms from the Division of Motor Vehicles to apply for a Disabled Person tag for the car. If nothing else, I'd be prepared for the next surgery come winter...

But when I reviewed the requirements for specifying the disability, I feared I might be considered "too good" for the description listed for lung disease. Rather than simply mailing the form to Fox Chase with a cover letter, I decided to wait until October and my next checkup with Dr. Goldberg - that way, I could plead my case in person.

After breathing a sigh of relief at the news of a good chest x-ray, the doctor signed my form with no questions asked. And we left to make an appointment for my next visit, at which time we'd set the exact date for the next lung operation.

Little did we know what else we had to look forward to...

Modified Date
2000-03-04
Phone Calls And Frustration (November, 1998 - January, 1999)

Phone Calls And Frustration (November, 1998 - January, 1999)

Our 1998 holiday season began not with celebratory fireworks, but with one of "those" letters from Fox Chase the Saturday before Thanksgiving.

The letter informed us that "due to scheduling conflicts," my appointment with Dr. Goldberg scheduled for December 28 was now being changed to January 4. Considering I had hoped to have surgery that week, this was not good news!

So, when I went back to work on Monday, I called the Scheduling Office at Fox Chase and left voicemail stating that I needed to have this appointment in December. I was left a message a few hours later that the appointment was going to be moved to December 4. OK, so this was a little earlier than I wanted, but if it meant I'd get the surgery date scheduled that sooner, I'd take it - as long as I could get the necessary CT scans expedited. Now, since my PCP doesn't like the radiology place I use, I knew I'd be in for a little challenge...

Although I was able to get an appointment for the scans for the afternoon before Thanksgiving, getting the referral approved turned out to be a stressful ordeal. I finally got the good word from US Healthcare 90 minutes before the scheduled appointment for the scans - just enough time to choke down the last of the "barium cocktails" that needed to be finished an hour before the scan.

I picked up the reports the following Tuesday afternoon. Although the lung report contained few surprises (heck, we knew there were spots to be removed...), it was the report on the head that gave us cause for concern. Two phrases immediately jumped out at me: "Probably recurrent tumor" and "This is a new finding." I started to get shaky.

The source of all this was a lesion in the right temporoparietal region measuring 2 x 3 centimeters. (If you wear glasses - or know someone who does - touch the screw that connects the right earpiece to the rest of the frame and "work your way up and back" to find the general area.) When Ken finally came home from his last day at his current consulting assignment and was composed enough to review the scans, he noted that this growth seemed to be in the area underneath the plate that was inserted back in October 1993.

I tried to call Dr. Urken's office at Mt. Sinai the next day. It wasn't any fun...

My first call to Mt. Sinai was met with, "Call back in a half-hour or so - there's no one at the appointment desk." A half-hour or so later, there were nothing but busy signals. Gee, I thought "Gridlock Alert Day" referred to cars - not phones... When I finally got through and requested an appointment, I was told, "He's all booked up until January 4." I pleaded the case, then got put on hold for one of Dr. Urken's direct assistants - and got disconnected after about 5 or 10 minutes.

It took another 10-15 minutes of busy signals before I could get through again. This time, I was able to get the person in question, who even had his "real" schedule (or at least the power to do something about it, I guess). I pleaded my case one more time, and she replied that she'd "get right back" to me with a possible appointment. That was around 10:30. I heard nothing else...

I resumed the battle with the busy signals, etc. around 2:15, and finally got the person I needed, who cheerfully informed me the doctor opened up some time on Saturday. "How about 7:30 Saturday morning?" she asked. Grr...not with a cousin's bar mitzvah at 9 in Manalapan... Besides, if he didn't want to say anything until his radiologist reviewed the films, it wasn't worth making the effort to drag ourselves into New York - all we'd hear would be, "Yes, there's something there, but I want to hear it from the radiologist." Nah... In the meantime, I faxed the infamous CT scan report.

Meanwhile, there was the matter of my next appointment at Fox Chase that Friday. What would Dr. Goldberg say? Would I have lung surgery as scheduled in January - or would I have to undergo brain surgery at Mt. Sinai first?

We got our answer on December 4, 1998. Apparently my radiology place had faxed all the reports to Dr. Goldberg - and he was ready and waiting with his radiologist to see the scans. A few minutes later, he walked into the examining room - and as Ken later told me, he didn't look pleased.

"Anything I do is on the back burner - you have to get the head taken care of first," he said. "The lungs can wait." Those words rang like a gong; as if time had suddenly bcome frozen.

Dr. Goldberg asked who my neurosurgeon was, and I told him what I could recall of the last such operation five years earlier. (We later concluded that had I not already dealt with a neurosurgeon, we probably would've been making arrangements for surgery then and there.) He went on to explain that the tumor didn't seem to be in an area in the brain "that would affect any major functions." It seemed to me that we had another of those situations where one might think, "If there was any place in the brain to have this stuff, this would be it."

Then, with a "good luck - come back and see me when you've recovered," he left the room - and we were left with the impact of this bit of news. It wasn't pretty: It took several minutes for Ken to get composed enough to leave the examining room with me. And it took a little while longer before he was able to think of driving. But first, I called Dr. Urken's office to inform them that we were sending the CT scans via Priority Mail - with an admonition to keep a close eye on this stuff. (Since they had lost those chest scans over a year ago, I was wary about mailing these films to them.) I also told them that someone ought to warn Dr. Sen about this, if he hadn't already been told. And with that, off we went to the post office...

Still, it was a difficult day - and night. We took turns going to pieces - Ken much more than me. (I was back in my usual state of being numb when it comes to this stuff. Besides, Ken needed me much more anyway.) As much as I've always had to walk around with the knowledge that this stuff can come back - again and again - it still doesn't diminish the "jolt" one feels when it does.

Well, we attended that bar mitzvah the next day - and it proved to be a much-needed break, however temporary. I called Dr. Urken's office on Tuesday to confirm that the films we'd shipped after leaving Fox Chase had arrived safely. Although they did - and had already been forwarded to the radiologist for review - I was told that the doctor himself wouldn't have a chance to look at them until Thursday. And so the shaking continued...

I called Mt. Sinai one more time on Friday morning. While I was on hold waiting to speak to someone, Ken left me voicemail that Dr. Urken himself had left a message on the home machine an hour earlier. The doctor only stated that he'd be available on Monday for me to call and discuss the scans with him. (The staff told me he was out of town, so who knows where he was calling from.) I told the staff I'd prefer to speak with him as soon as possible, and (once again) left them my work number.

Of course, we didn't hear a thing, so it was yet another weekend of waiting and wondering... We tried to take some small comfort in that if things were really bad, then the message would have asked me to make an appointment to see him on Monday. Jitter, jitter..

After another difficult weekend, during which I finally went completely to pieces for the first time over all this, I called Dr. Urken. Alas, all he'd tell me was, "Yes, there"s something in there that needs to be addressed." (Surprise, surprise...) To add to my frustration, he told me that he had just sent the scans over to Dr. Sen (Now, didn't I tell them he should've been called already???). When I expressed my dismay, Dr. Urken said he'd try and get me an answer by the end of the day...

After hearing nothing (again), I called Dr. Urken the next morning before I left the office for an off-site meeting. I found out he was in the OR, but left a message for him to call me at the office.

So, I dialed for messages after my meeting ended around 11:30 - and found that Dr. Urken left me voicemail about 20 minutes or so earlier. He gave me a number to call at the OR, and the person on the other end would be able to contact him to take my call. (Gee, I guess I rate...) And yes, I hardly had to wait for him to pick up the phone.

And what did I find out??? That Dr. Sen was out teaching - in India - and was scheduled to return to the office on Thursday. Dr. Urken then told me he tried to press the chairman of the neurosurgery dept. for an opinion on my scans - but the chairman said he felt "uncomfortable doing so" without Dr. Sen seeing them first. After all:

  • Dr. Sen's the expert on this stuff (cranial base surgery)
  • Dr. Sen has the history on me.

When I asked Dr. Urken (among other things), "How bad is it for all this to be going on???" he said that he felt this was more a matter of "protocol" than anything else at this point. But then, as I later told Ken, "After all, we've worked in AT&T and Bellcore long enough to know how long it can take for things to go up (or down) the chain...." And so we had to wait another few days...

Dr. Sen himself finally called me at work early Thursday afternoon. He said he "didn't think there was any doubt" that we were dealing with a recurrence - in "just about the same spot...maybe a little above" the one that was removed five years ago. He also confirmed that the tumor was "still in a very resectable place (in other words, operable)" - and that it didn't "involve anything sensitive in the brain."

So, we're probably looking at an operation similar to the one that was performed five years ago. However, Dr. Sen pointed out that the "details" could be "more complicated" because of the work that was done back in 1993. Best of all, though, we don't have to rush into the OR. "I want you to have a happy holiday," Dr. Sen said. Perhaps now we could begin to think about enjoying the Holiday Season - something I discovered had become an impossible challenge up to that point.

In the end, I authorized Dr. Sen to begin working on setting a date for the surgery - anytime after January 1. Given our previous history with Mt. Sinai, I figured it would probably take at least a week for the cast of characters to get their calendars in sync.

And then, with tears in my eyes, I hung up the phone; relieved to finally have a clue about what was going on.....

Modified Date
2000-03-04
The Roller Coaster (January - August, 1999)

The Roller Coaster (January - August, 1999)

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.

Modified Date
2001-07-12
The Double Whammy (September, 1999 - 2000)

The Double Whammy (September, 1999 - 2000)

The rumors had been rumbling for several months.

First, some of us heard that there would be "significant cutbacks" in the Consumer Services unit of AT&T by the first quarter of 2000. By the fall of 1999, word was floating around that one-third of the directors would be gone by January 1.

By early November, the District Manager told my group that people might be shifted into different projects and suggested that we consider forwarding our resumes in order to help facilitate the process. Not being a programmer or an analyst, I saw the writing on the wall: it would be very difficult, if not impossible, to find me a "new home" in this scenario. Although I had been revising my resume and glancing at internal job postings since I returned to work from the January surgery, now I had to work a little harder on this stuff...

About a week or two later, the "suggestion" to submit resumes became an "order." I finalized my resume and e-mailed it right before I left for the Thanksgiving holiday.

A few days later, my manager informed me that I'd have a "new job." It was job-hunting. "I'm sorry, but I can't keep you," he explained. I later learned that several others in my group had received similar news.

All of us were told that February 1 would be The Big Day: Some of us would be "retained" - either in present positions or new ones within the Directorate. Others - like me - would be placed "At Risk." That meant we'd have 60 days to find another position within the company or be "separated" from AT&T.

Now I had to figure out how to turn my AT&T-based resume into a document suitable for prospective employers "in the outside world." I managed to finalize this new version by the end of 1999, and then posted it to Monster.com. I also e-mailed it to a recruiter who had "cold called" me only a few weeks earlier. Fortnuately, it didn't take long for the calls to come.

In the meantime, it was time for another set of MRIs of the head at Mt. Sinai...

On January 20, as I was preparing to leave the house for my first non-AT&T interview in 12 years, Dr. Costantino's office called. Both he and Dr. Sen wanted to see me on the 27th. "Something's lighting up the film and we don't know what it is," was all the physician's assistant could tell me. Was there a problem with the machine - and would I have to repeat the scans? Or was it something else? I fought back tears as I rode the train to Jersey City and my interview. Although I didn't get that job, the recruiter told me the client was impressed with me - how I managed to "suck it up" in spite of that phone call was beyond me!

That fateful day of January 27th arrived, and we were finally called into the examining room. The scans were already posted on the light board. Ken took one look - and promptly sat down on the nearest chair, emotion already overtaking him. "The bad news is that there's been a recurrence," Dr. Sen explained. "The good news is that it's perfectly operable." For some reason, this tumor showed up in practically the same area as the one that was removed only a year earlier. However. I was warned that this surgery could have more risks than my earlier ones - the tumor was close to an area that could affect the motor skills on the left side. ("Well, at least you're right-handed," the doctors told me. Small comfort.)

Numbed as usual by this news, I asked the doctors, "How soon do we need to take care of this?" They told me a month to six weeks. Then, seeing Ken crying, the doctors offered to excuse themselves as we struggled to deal with this piece of news. Brain surgery - again - AND job-hunting??? What a Double Whammy!

Ken insisted that we "have some fun before we have to go through all this again," so we agreed to ask whether we could have the surgery the week following a square dance weekend in New England we've enjoyed in the past. And so, the surgery was set for Monday, March 6 (later changed to the 13th after someone discovered he had a schedule conflict) - and off we went to inform everyone and try to figure out how I was going to look for a new job NOW. I was also scheduled for another MRI in two weeks to determine whether this new tumor was growing quickly - a bad sign with ACC.

I had the next MRI on February 15th; and after more prolonged agony while awaiting results, we learned that the tumor had not grown at all - good news. However, it had become more defined - and now appeared to be bordering on an area that affects one's vision field. I was assured that I would be able to see - only I wouldn't be able to see quite as much as I'd been used to. Suddenly, looking for a new job in New York or anywhere that would require using mass transit seemed to be a good idea.

I was ordered to get a vision field test, so I called my local eye doctor for one. After I explained my situation to the techincian, she said that her daughter had once been in a car accirdent and her vision field wasaffected - yet, thanks to some specialized rehabilitation, she was now able to drive a car. Perhaps I could too...

There were a few more weeks before the surgery, so job-hunting continued. When I was asked for an available start date, I explained that I was scheduled for surgery on March 13th, and I'd be out of commission for 4-6 weeks. I did not explain the nature of the surgery; except for three headhunters who tried to arrange interviews during the week I was expecting to undergo pre-admission testing - Mt. Sinai didn't confirm a date/time until it was too late. Although it would've been sweet to have had a new job waiting for me once I recovered from surgery, some things just aren't possible...

And it was certainly a confusing time at AT&T. How many of my colleagues would be gone when I finally returned to work? And, while my last official day was SUPPOSED to be March 31st; because I'd be on disability by then, my "off-payroll date" would be set after I returned to work. The question, though, became: which date? Generally, one is not considered to be on disability until the 8th day of an absence. According to my termination package, my off-payroll date would be calculated by the number of days I was away in March. As I prepared to leave for surgery, my manager told me that the Directorate was going to try and get my disabilitry date pushed back to the first day of my absence. One more mystery...

After all the "fun" we had the previous year, we were a little smarter about accommodations this time around. Last time, we learned much too late that the. hospital has a facility called the Mount Sinai Guest Residence; a mere block or so from the hospital. This building once served as a residence hall for doctors and nurses and now boasts 26 rooms for patients and their families. Ken booked a suite that included a kitchen for himself and my mother for the night prior to surgery and the evening of the surgery. I got to stay there for the evening before the surgery. One could order groceries, lunch or dinner from nearby facilities - or even bring provisions in yourself. It was refreshing not to have to worry about cabs!

Surgery took place bright and early on Monday, March 13th. Ken and I said good-bye at about 7:40am. We were told that the total time would be 8 to 10 hours. Dr. Sen came out at 12:40pm and said that his piece had gone very well.

Dr. Constatino came out at about 3:30pm to say he was done with the reconstruction. Ken came in to see me in at 6:30pm. I wound up staying in the ICU untl Friday afternoon, when I was moved into a "step down" area for the weekend. (But not before getting a "new" pair of glasses. When Ken took them out of the pouch where he had been storing them, he discovered that they had cracked right down the nosepiece. Fortunately, there was an optometrist near the hospital = who was able to find a frame for my lenses. Even gave Ken a slight break on the cost.) I finally landed in a "real" room on Sunday.

Although I made reasonable progress, all things considered, there were a few concerns. The first "issue" surfaced when I tried to eat - and the right side of my mouth didn't cooperate very well. I suddenly had memories of 1981 - and how did I cope back then??? Even though I kept asking the doctors whether anything had happened to my facial nerve, no one would confirm anything for me. (Dr. Sen finally admitted at my first post-op checkup that the nerve may have been "jostled" during the operation. Whew - at least I wasn't imagining things!)

I was discharged on March 22. I came home with some interesting "additions" this time around - notably some heavy-duty staples. There was a row of them that extended down my middle front - beginning about 2 inches below my breasts and extending to just above the groin area. This was the result of the rectus flap; in which muscle and fat was taken from my abdomen - in place of the titanium that caused all the trouble last time around.

The head scar began with an oval near the top of my head, then extended in a row of stitches down the right side of the head, extending to about halfway across the neck. And yes - this time they got smart and shaved all the hair off.

To complete the not-so-pretty picture, there was a large mesh on my left thigh where a skin graft was taken. Although it stung a bit at least this one didn't get infected like its mate was in 1993.

All in all, though, recuperation progressed fairly well. Ken didn't have to return to the hair-washing business for nearly as long as he had feared.

I resumed job-hunting from home in late April, as some of the headhunters I spoke with in March actually called to find out how I was feeling. Also, I actually had an in-person interview a few days before I returned to work on May 1. Since the interview was in Piscataway, this served as an appropriate "test" of how well I could drive by myself.

Admittedly, job-hunting in this condition felt a bit awkward. First of all, I had to wear a turban for interviews - and for a time, the scars on my head and neck were quite unattractive. Because of the effects of the operation on the facial nerve, not only did I have a more pronounced "droop" than before, but my speech was sometimes affected as well. When possible, I tried to schedule my interviews for mornings, when I tended to feel better. Still, there was more than one occasion when I'd leave an interview wondering my speech had deteriorated - or how much my "unusual" appearance may have affected someone.

My last day at AT&T was May 19. Those last few weeks were filled with phone calls and interviews - but no offers. Once I was officially unemployed, though, things became even more hectic: several calls a day, either from headhunters or prospective employers for phone interviews. E-mail buzzed with requests for resumes and arrangements for interviews. As it turned out, I had no time to either visit AT&T's Resource Center - or file for unemployment.

On June 2, I accepted an offer from SPL WorldGroup to be a Technical Writer in its Utilities Practice in Morristown, NJ. SPL (for Systems Programming Limited) develops customer information software for the utility industry; and has several major customers around the world. I started work on June 12. I was pleased and relieved that - not to mention amazed - that the job hunt was completed so quickly!

Modified Date
2001-07-12
Breaking In A New Hospital (2000 - 2001)

Breaking In A New Hospital (2000 - 2001)

The summer of 2000 was a time of adjustments. I had a new job, with a much longer commute, that kept me busier than I'd been in several years. Given that I was still, in effect, recuperating from surgery, I often came h ome from work exhausted, usually sleeping for at least an hour before dinner.

However, my physical strength eventually showed signs of improvement, and I was able to begin working out semi-regularly in the health club located in the building where I worked. Even better, my head was staying free of tumors; and the "stuff" in my lungs was at least remaining somewhat stable.

The next bunch of changes began, though following my lung checkup at Fox Chase in October. When I returned to the office, I was greeted with e-mail from the Human Resources department announcing that the medical benefits package would change come the first of the year. And that wasn't all...

When I came home that very afternoon, there was a letter from Dr. Sen announcing that he had left Mt. Sinai to become the chairman of the department at St. Luke's-Roosevelt Medical Center in New York City. I half-jokingly said to Ken, "I wonder whether Cr. Costantino would follow him - they're buddies."

My answer came a few days later, via a letter from the Mt. Sinai Department of Otolaryngology, announcing that Dr. Costantino had indeed left for St. Luke's-Roosevelt. So, do we stick with the hospital - or follow the doctors? Although I would've had no problem returning to Dr. Urken, it was hard to forget how Mt. Sinai's chairman of neurosurgery refused to make a diagnosis back in December, 1998. So, we eventually decided to follow the doctors...

After the benefits change took effect, I had my next brain MRI in January. The report came back with some unpleasant-looking references to "new metastasis" - this time on the left side of the brain. It took Ken a little while to locate the area being referenced, and when he finally saw it, he commented, "It looks like a smudge." The new spot - which didn't resemble an average, well-defined tumor, was located above the left eyebrow, just below the hairline.

With these films in hand, we visited the doctors in their new home a week later; and Ken described "the smudge." Dr. Sen's reaction? "You know, any other neurosurgeon would say you're crazy - but it looks like a smudge." And so, we agreed to have another scan done in a few months to see whether this "smudge" would develop into something that looked more like a tumor.

The next MRI took place on March 30. This time, the "smudge" had indeed begun to resemble a tumor; so now it was time to determine what to do about it. Two options were described: stereotactic radiation or surgery. Dr. Sen felt that because the tumor was located in a "silent area" of the brain - that is, not encroaching on an area that handles any major functions - he felt that this operation would much less of a production than the last two surgeries I've had.

After an assortment of research - and another lung checkup at Fox Chase - we decided to opt for surgery. The date was set for July 12th - after our vacation in June. And while we were on vacation in California, we received a message from Dr. Sen's office asking whether we'd be willing to move the operation one day. That's right - Friday the 13th. "Well," Ken said. "It should be good luck for YOU - but bad luck for the tumor."

Here's what's supposed to be happening, as far as I know:

  1. The doctor feels the tumor should be easily reachable via computer-assisted surgery. This means I'll first have an MRI (The doctor's office called it "brain lab" today - wonder what THAT means!), then the surgeons will use both the film and (I presume) a monitor of some sort to pinpoint the exact location of the tumor.
  2. Once the tumor is located, an incision will be made near the hairline (in an effort to prevent having to shave my head this time) - and then they'll take the thing out.
  3. The procedure is expected to take about 3 hours. If all goes well, I'm supposed to be in hospital for only 3 days - MUCH less than any of my previous surgeries of this type! Pesonally, I'll believe it when I see it.

But I guess we'll all have to wait and see...

Modified Date
2001-07-12
Reflections

Reflections

(This section will probably be modified occasionally as I discover more thoughts to share.)

So, why have I gone through all this time, effort, and emotion to share this "continuing saga"?

If you've learned anything about me by now, you must know there isn't a single reason! How about these?

  • First of all, since I've told the story numerous times over the years - in various forms - having it all in a centralized location simply makes it easier when the situation arises. If someone wants "the whole story," he/she can simply come here - or we can print it all out.
  • Since I've been dealing with a rare form of a rare form of cancer, there may be some information in here that could be helpful to anyone else who finds out that he/she has been afflicted with this disease.
  • Finally, some people have actually found this story inspiring and have suggested that it might do the same for others.

In this final section, I'd like to reflect by sharing some correspondence I've received, some items I've posted - and some writings that have inspired me. I've also tossed in a few thoughts that haven't fit anywhere else. Since reflections are rarely organized, this section has been arranged as a series of random thoughts - some long and detailed, others less so.

The Whole Story?

Believe it or not, although I've documented much of my experience with cancer in these many pages, I've actually left a few things out.

Much of what you've read consists of the stories I've most often told (or written) to people. There are some elements, though, that have simply not fit into this narrative. They have had no less of an impact on my life with cancer, though. These include (in no specific order) the following:

  • The precocious boy (no more than 10 years old), who upon discovering my inability to competently play his video game, decided it was much more interesting to find out why my face looked different.
  • The joys (!) of interviewing for jobs, featuring the manager who, during my first round of "dueling eyeglasses," asked me in all seriousness, "Do you realize you are wearing two pairs of glasses?"
  • The emotions of the earring counter.
  • Photographs - a necessary evil.

If you're really curious about these things, use the contact form to send me a e-mail message.

Reflecting on the Forum

Whenever I've told this story (either in person or in writing), the most frequent reaction lies somewhere between amazement and reverence for the way I've gotten through everything that has happened over the years. It has been difficult for me to accept, since I always felt that this experience was simply something I needed to just "get through and move on."

Once I joined the Cancer Forum and discovered I had some valuable information to share, it became just as easy for me to provide information and support as it was to accept the support others offered Ken and me. More recently, as the urgency of my own situation has lessened, I've gained a great deal of satisfaction from serving as an "information source" for the kinds of experiences I've had. As some of the Forum stalwarts recall that I've been dealing with adenoid cystic, I get assorted e-mail from folks who "wander into the Forum" wondering about this strange cancer they've never heard of. Not only have I heard from patients, but I've even corresponded with a doctor from England. It's all been quite touching.

While on vacation in San Francisco in December 1995 (Yes, Ken had another conference, I had the vacation time to use - and I needed to see how well I could do when I was much healthier!), I posted the following in response to someone's quandary concerning emotions (in part):

You ask whether an "emotional firestorm" awaits. It does and it doesn't, depending on your general emotional makeup. ...I found that thru the surgeries, radiation - and stuff associated with the recurrences diagnosed a decade later - that I went about life "with blinders on." I don't recall crying on breaking down upon receiving "the official word" - in a way, it was something of a relief that there was a reason for all the pain I'd been experiencing. The emotions eventually came out (they almost have to) much later - but usually over strange things like people being unable to deal with my disfigured face, or just amazement over what was happening all around me at the height of the problems (such as the family's wait thru all those hours of surgery).

 

Looking back, perhaps the reason I didn't have the big emotional scene that affects many others was the fact that no one ever told me I WOULDN'T be able to do anything - and I could live a perfectly normal existance. I was also fortunate to be told early on that "cancer doesn't have to be a death sentence." In addition, I've been fortunate to stumble onto some excellent doctors - and it sounds like you've been equally lucky thus far.

 

So, don't think there's nothing wrong with your feeling as you do - but don't fight the feelings if they do come along.

 

Good luck!

Hero?

In September, 1994, Joyce Brabner posted an announcement to the Cancer Forum concerning a book she and her husband, Harvey Pekar, had written called Our Cancer Year (published by Four Walls Eight Windows). Harvey was a cancer patient suffering from non-Hodgkins lymphoma, and this black & white comic book describes what happened to them during the course of his illness and treatment. Joyce's post included the following, which spoke volumes to me as I neared the one-year anniversary of my brain surgery: (Reprinted without permission)

We're suddenly supposed to be cancer "experts" or role models although there are, as far as I know, at least 100 different kinds of cancer and everyone copes differently.

 

We are not inspiring people! We don't glow from within with secret knowledge. Cancer wasn't a wonderful chance for us to grow. We know an awful lot of people braver than we are and you do, too. We screwed up big time, more than once, and were sometimes very hard on each other. We weren't able to stop time, so we had to live through everything else that was going on as well. We weren't the only people in trouble that year. What happened that year was ordinary, and - finally - bearable.

I think Harry summed up my experience with the following phrase from his book:

You don't have to be a hero to get through, you just gotta keep breathing.

A few months later (December, 1994), I posted a summary of my own feelings in response to someone's question:

People have kept wondering how I've managed to "stay positive" thru this mess that (to me) sounds worse than it is. I suppose I can point to a few factors:

  1. I've been fortunate in that we've managed to stumble onto VERY good doctors. Although we found the first ENT in the phone book, it was him who passed my biopsy around and eventually referred me to the folks at Mt. Sinai. I was sent to the doc that performed the 11/81 surgery "not only because he's a fine doctor, but also because he's a human being." It was only when the lung business started that we began to discover that the doc we found in the phone book had a darn good reputation himself.
  2. I've been fortunate in that my situation has been such that no one's told me I CAN'T do anything other than lead a normal life. I've learned to listen to my body - it tells me in no uncertain terms when it doesn't like something. The key is to figure out what you can do - then figure out how to get around what you think you can't do. Sometimes there may be something you just can't get around, though - and you may just have to accept it. Depending on the circumstance, this may or may not be easy to handle.
  3. I'm VERY fortunate to have a wonderful husband, who puts up with a lot, if you know what I mean. This stuff is probably more difficult for families and friends than the patient himself/herself - after all, the patient gets to sleep thru all those sessions in the OR, etc. I've also discovered that this stuff is one heck of a way to find out who your friends really are. This is especially true for those who get left disfigured in some way by cancer - be it surgery, radiation, etc.

Separation Anxiety From Your Doctor?

As we all know, life is experienced in stages; each bringing with it its own trials, tribulations, and tastes. Things that appealed to us at one time may no longer seem the same at another, later time. Relationships grow, change, and/or cease to exist (perhaps to be revived later). Cancer or not, I certainly see certain things differently now than I did many years ago.

In November, 1994, I had my annual visit with Dr. Sullivan. During the course of the visit, he concluded that since I was already seeing so many other specialists, and that I didn't live near his Red Bank office anymore, I no longer had to continue seeing him. On the surface, this was probably good news - one less doctor to visit. But I was left with mixed feelings, as I shared with the Cancer Forum on December 1, 1994 (in part):

Hot news from here is Tuesday's annual visit with the no-longer-very-local ENT. After 15 yrs, he told me that as long as "nothing major" happens, I don't have to schlep down the Garden State Parkway to see him next year - as long as I forward copies of any reports I get (CT scans, etc.) in the interim from the folks at Mt. Sinai, etc.

 

While this is certainly good news, I couldn't help but feel slightly traumatized as Ken and I walked out to the car. Gee, this is the doc we picked out of the phone book when the pains in my ear were too much for Ken to handle anymore (We were simply told "there are good ear doctors in Red Bank".)...the doc who seemed even more scared than us when 2nd and 3rd opinions called "the lump" adenoid cystic...the one who got taken aback when I told him I'd known him almost as long as I'd been married. Separation anxiety, anyone?

 

On the other hand, it felt kinda weird that we seemed to know more than he did about certain things nowadays. I guess CIS, Internet, and 5 operations in 2 yrs can do that to you...

The Losses

One of the "occupational hazards" of joining any close-knit community is the profound sense of loss when someone leaves. As you can imagine, this can be especially painful in an on-line community such as the Cancer Forum. Even though most of us may never meet face-to-face, we've been able to draw upon each other for support in such unique ways over the years. It can make the news of someone's passing all the more difficult to accept.

Barbara Stone was the self-proclaimed "Forum Mom" when I joined the Cancer Forum in January 1992. She was almost always the first to welcome each newcomer with words of encouragement and "Love and Prayers." Barbara gave of herself willingly, inspiring those of us who eventually became regulars to do likewise. I like to think this tradition continues on the Forum to this day. We tried to meet Barbara in person when our square dance travels took us to Detroit in 1994. Alas, we couldn't synchronize our calendars, and we missed each other. How sad!

Barbara passed away in June, 1995. One of the system operators of the Cancer Forum summarized the funeral events for the Forum (in part, reprinted without permission):

You cannot believe what an a range of astonishing human beings Barbara attracted over her lifetime. Even the prelate she dragged out of retirement to do the honors is a goldplater. The events of the weekend, the conversations, the pure unadulterated love and kindness and khesedh in the air were heady. The weather was perfect. PERFECT! Absolutely wonderful Barbara weather as we stood at her graveside or wandered the church grounds. God knew He'd better shine His shoes and get it all right.

 

You were absolutely right. We are dealing with a Saint, here. And she shall not ever leave us because she lives on in memories like yours and mine and thousands of others who found that she had answers - or at least clues - to the horrifying mysteries we all face.

 

We will never see her like again.

 

But now we know what to look for...

Trisha McDonough was one of those Cancer Forum members we were fortunate enough to meet in person. She arranged a gathering at a Greenwich Village (NY) bistro in the spring of 1994, while I was in my wig-wearing days. A petite lawyer who'd undergone various experimental treatments for breast cancer, Trisha was a bright, determined young woman.

I was shocked when I logged into the Cancer Forum late that fall, after an absence of several weeks, to discover a message that Trisha had fallen so ill "she may never be able to log on again." She passed away in December, 1994. Ken and I attended a memorial service in January, and I posted the following to the Forum:

I'm sure some of you have been waiting for this, so I'll do the best I can - deciphering notes written thru tears isn't easy...

 

Trisha's memorial service was held in the Greenberg Lounge at the NYU Law School yesterday (Friday, Jan. 6). We found it a very interesting site: Large, "old New York" style room (if "The Paper Chase" took place at NYU, it would look like this.) with portraits of Law School deans on the walls, and pictures of women alums who've gone on to judgeships on the walls in the immediate lobby. A collage of pictures and newspaper clippings featuring Trisha sat at the front of the room. A bagpiper in full regalia played. Ken estimated the crowd at 70-80. Other CF members in attendance included David Martin and Dan Draney.

 

Trisha's "#2 sister" Dolores opened by explaining that the service was to be unstructured (in the Quaker tradition, I guess) - anyone could approach the mike and share whatever he/she felt like about Trisha and what she meant to him/her. Dolores went on to thank several groups of people for their support over the past 12 years: the doctors/nurses, law school friends, members of the firm where Trisha worked, fellow sailing enthusiasts. Special thanks went to the members of the Cancer Forum and the Cancer Care support group, "who knew what it was like to be Trish."

 

The presentations that followed were a fascinating mix of stories, songs, poems, and thoughts that showed the many facets of Trisha: Her energy (even in the face of what she endured), determination, and love of people. Her doctor spoke of Trisha's courage to try new, experimental treatments - whether or not they would help her - in hopes they would help others. Several spoke of Trisha's last days and how she managed to end her life "her way" - at home, surrounded by family.

 

I attempted to speak for those of us here on the Forum "who've been crying at their keyboards (as I'm doing as I write this)" and included a brief description of the NY luncheon she arranged last spring - my only meeting with her.

 

Finally, Trisha's father closed the proceedings by sharing the only two complaints he'd heard from Trish during all her battles: "It's not fun" and "It's boring." He finished by quoting Edna St. Vincent Millay's words: "We are not resigned." The piper played "Amazing Grace" and we adjourned for coffee and cookies.

 

All in all, an evening that many feared would be forboding turned into a celebration of Trisha's life - and of life itself. I suppose that's how Trisha would've wanted it.

Lightening Up!

One thing I've learned from this experience is the importance of maintaining a sense of humor in spite of all that's going on. Norman Cousins, in his book Anatomy Of An Illness, described how comedy - notably watching old Marx Brothers movies - helped him cope with his own illness. Laughter is truly the best medicine!

Sometimes, though, a little gallows humor which only makes sense to "those in the know" can also do the trick. The following was posted to the Cancer Forum in June, 1992, a few weeks before I was to undergo Lung Surgery Number 2 (Reprinted without permisson):

THE 10 LEAST LIKELY ACTIVITIES FOR THE NIGHT BEFOR ENTERING THE HOSPITAL TO HAVE A LUNG REMOVED

  1. LEAST LIKELY SONGS TO LISTEN TO: "I'll Probably Feel A Whole Lot Better When You're Gone" and "Aqualung" (tie)
  2. LEAST LIKELY SPORT TO VOW TO FINALLY LEARN WHEN ALL THIS IS OVER: Pearl Diving
  3. LEAST LIKELY MOVIE TO RENT FROM THE VIDEO STORE: Breathless
  4. LEAST LIKELY ROCK GROUP FAN CLUB TO JOIN: Air Supply
  5. LEAST LIKELY THING TO BUY TO PLAY WITH THE KIDS DURING CONVALESCENCE: An enormous inflatable pool toy
  6. LEAST LIKELY THING TO SAY TO ONE'S WIFE AT A FANCY GOODBYE DINNER: "That dress takes my breath away."
  7. LEAST LIKELY NON-FICTION BOOK TO TAKE OUT OF THE LIBRARY: "Where's The Rest Of Me" by Ronald Reagan (Note: also appears on least-likely list for those not entering the hospital at all)
  8. LEAST LIKELY SHORT STORY COLLECTION TO TAKE OUT OF THE LIBRARY: "Emperor of the Air" by Ethan Canin
  9. LEAST LIKELY POEM TO RECITE OUT LOUD: "Ode to the West Wind" by Percy Shelley
  10. LEAST LIKELY ECONOMIC PROBLEM TO BE CONCERNED ABOUT: Inflation

And In The End...

It's hard to believe I really have to come "the end" - but only for now.

This has been a most interesting experience, to say the least. At the beginning of this saga, I called this "resurrecting and recollecting" process "not only physically taxing, but also emotionally draining." And that was indeed the case - initially. I discovered that I needed frequent breaks - and lots of tissues at hand - as I re-read postings I hadn't seen in several years.

In retrospect, this emotional experience has actually been quite fascinating - for both Ken and me. For one thing, this is probably the first time my husband has seriously critiqued my writing - a role reversal of sorts. (Most folks who see both our names attached to internet postings know who's the hacker and who's the writer!) More importantly, it has been a stellar opportunity for both of us to reflect on a significant period in our lives - and learn from it; as individuals and as a couple. And, we'll no doubt continue to learn...

Modified Date
2001-07-12