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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 preapre for yet another operation...

Modified 3/4/2000