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...