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...