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.....