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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 3/4/2000