The Red Shirt
If you've visited some of our other web pages, you know that square dancing has long held a special place in our lives. Not only has it been a wonderful social outlet, but also the source of many special friendships over the past 20 years. It was dancers who encouraged me after I lost my ear in 1981, when most members of my synagogue turned away. The couple who kept asking Ken whether I was "for real" when I tried my first round dance after that infamous surgery constantly called to check up on me throughout (and in between) my 3 lung surgeries. Thanks to the internet, I now had square dance friends from around the world - and many sent get well wishes in response to Ken's postings describing my progress. A few even phoned me while I was in the hospital!
Perhaps, then, it was appropriate that square dancing played an unwitting role in my next medical adventure.
It was mid-August, 1993. We were in New Hampshire for a weekend of difficult challenge dancing. Since I was crazy enough to attempt dancing at this event the previous year - only a few weeks after Round 2 - I felt I had to redeem myself for that performance. Six months after returning to full-time work following Round 3, I was certainly feeling better.
We were having breakfast at the Nashua Marriott when it happened. I felt the wetness on the right side of my face near my "ex-ear" that I'd grown accustomed to - a reaction of sorts from having no parotid gland. However, this didn't feel like the usual sweat. I brought my fingers in front of my eyes - they were red with blood!
I wiped the right side of my head with my napkin - it was red. I told Ken to look up from his breakfast - and he noticed the red spots on my white polo shirt. I excused myself and raced to the nearest rest room.
I looked into the mirror and tried to make sense of what was happening. I tried to clean off the blood from my head as best I could, but I couldn't figure out where it was coming from. I went back to finish breakfast (as much as I dared at this point), then we headed back to the room so I could shower.
I felt as though I was Janet Leigh in the movie "Psycho" - only the knife was missing. All I could see was red mixed in with the clear water. It came down over my body. It streaked across the tiled wall. It was scary.
I toweled myself dry and headed back to the bed. My husband, who hates the sight of blood, was forced to try and figure out the source of all this grief. I really didn't want to go to an emergency room - I didn't want to have to explain why my right ear was missing before anyone would deal with the current problem. Fortunately, Ken had packed a box of bandages - and he used many of them to cover up what appeared to be the source of my bleeding. Whew! We were able to dance the rest of the day without any further incident; but not without some trepidation.
For the next few days, we seemed to keep the bleeding at bay - until I washed my hair. Then Ken would be pressed back into service - stopping the inevitable bleeding (which, fortunately, had lessened from that initial scare), then bandaging up the area. After a week, however, we concluded that nothing was improving except Ken's bandaging skills, so we made an appointment to see Dr. Sullivan on August 24, 1993.
The doctor took a look at the area and poked and prodded; then rebandaged it. He shook his head. "It sure looks different from the last time I saw it (November 1992)," he said. He recommended that I'd better get myself back to Mt. Sinai, as he felt the staff there would have a better idea of what to do about it than he would. I was also told that if I couldn't get an appointment with Dr. Biller, then I should try to see one of his associates "whose name begins with U."
I called Mt. Sinai the next morning. Sure enough, Dr. Biller was now specializing in throat cases, not ears. I was given an appointment with Dr. Urken. So we got the recommended letter of the alphabet! I raced to the local library in search of the New York magazine article about New York's best doctors - the one that had Dr. Biller on the cover. I was pleased to discover Dr. Urken's name on this list too! It reduced the tension just a little bit.
We met Dr. Urken on August 31, 1993. Tall, trim, and soft-spoken (My sister later pronounced him "cute."), he reviewed my history and promptly gave me a needle biopsy. Then I was sent off for an emergency CT scan. By the end of the week, we had the news: Yet another recurrence.
Unlike the recurrences in the lungs, which seemed to be caught just as they were beginning to surface, we caught this one in the nick of time. This was a large tumor - a few centimeters - that not only broke through the skin (hence the bleeding), but also ate through the skull, just pressing against the brain without going in. Talk about pushing the envelope!
Dr. Urken rattled off a bunch of things related to what needed to be done - most of which made no sense to me at the time. (Some things hadn't changed.) However, I did understand that the next step was a visit to the neurosurgeon, Dr. Sen. We hung up the phone next to the bed, then sat and shook for several minutes wondering, "Now what?"
Ken's family insisted he call his cousin Louis, a neurosurgeon in Upstate New York, to find out what he know about Dr. Sen, if anything. Fortunately, the news was good. However, Louis did ask me whether I'd been experiencing headaches. Well... I never thought about it, but Ken did point out that I had been popping a lot of Tylenol tablets lately... could there be any connection?
I called Dr. Sullivan with the news. I'd had a needle biopsy in his office one evening in late summer, 1986 to determine whether there was a reason for some pain I was experiencing on the right side of my head, but it turned up negative. We didn't think much of it at the time - maybe we should have? The doctor told me that the only way it could've been caught sooner would've been by repeating the procedure periodically until we "hit pay dirt." I couldn't argue much with that logic...
Armed with our pile of papers (We were finally learning!), we saw Dr. Sen for the first time on September 8, 1993. A short, trim fellow with a friendly manner about him, he showed us the CT scans. These films gave us a whole new meaning to having "a hole in the head." Here's how to visualize what I saw: Draw a simple circle on a piece of paper - that represents the skull. Now, erase a segment of that circle - say, a 20-degree arc. That was the area taken up by the tumor. This was one film that made sense to me!
We showed him our stack of papers. He was especially interested in the records from my radiation therapy. "You don't know how valuable this information is," he told us. It turned out to be a major factor in determining the course of my treatment. Apparently, the area of my head that had been radiated all those years ago couldn't handle many more rads (units).
Dr. Sen then explained what would probably happen (once he confirmed things with Dr. Urken): He would "peel off" the tumor, then insert a plate to cover the area of the skull now occupied by the tumor. (We joked that the plate was plastic so I could go through metal detectors at airports.) Then, Dr. Urken (whose specialty is reconstructive surgery.) would come in and graft some skin onto my head, then "rotate" the scalp. There would be follow-up surgery some months later to "undo" the scalp rotation. "For brain surgery, this should be a piece of cake," he concluded.
Gee, he seemed awfully upbeat! The doctor did warn me, though, that there could be some minor side effects; since "we don't know what every cell in the brain does." I would be placed on anti-seizure medication (Dilantin) for a few months following the surgery as a precaution. I was told that my memory might be impacted. "You may not be quite as sharp," he warned. Ken interpreted this to mean that I'd probably forget a square dance call. I imagined that information retrieval from the "Storehouse of Misinformation" may be delayed a bit.
I then spit out my list of questions: How long would the surgery take? How long would I need to be in the hospital? When could I go back to work? And, to further demonstrate my perverse set of priorities, could I travel to San Francisco with Ken in December? (Ken had signed up for a conference, and I had the requisite vacation time to use up.)
The answers seemed encouraging: A few hours of surgery (How could it possibly be worse than the 6-and-a-half I endured in '81?). A 2-week stay in the hospital. About 6 weeks at home. San Francisco? "Sure - go have a good time," he said. "Better than New Jersey."
We left feeling a little relieved, in spite of what we had to look forward to. I felt even more encouragement a few weeks later, when, during Rosh Hashanah services (which, needless to say, had special meaning that year), I discussed my situation with a former Rutgers classmate who was now an ENT. It turned out that he knew Dr. Urken - and promptly assured me that I was in good hands.
I had a wild time getting ready for this round of surgery. I had started a new job only a few months earlier. A co-worker left on disability two weeks before I was scheduled for surgery, and I inherited a project of his that was due just before I had to leave. As described the scenario to a friend via e-mail:
Just as I was struggling to get an appointment at Bayshore for a pulmonary function test (to make the neurosurgeon happy), who should call late last Thursday but the physician's assistant at Hahnemann, wondering how things were going (perhaps they finally faxed the reports to Mt. Sinai I requested a few weeks ago?). After I told him, I got a response of, "Surely you're going to see Dr. Brady before you have surgery?" So now, when do I squeeze HIM in - with Bayshore (not only the test but retrieving the last CT scan to take to Hahnemann), Tuesday's trip to the ENT at Mt. Sinai, work project that had to be ready for handoff for someone else to complete duplicating/distribution before leaving for the holiday (Yom Kippur), AND the holiday itself??? Not to mention getting out of jury duty; scheduled to begin Monday 9/20...
Well... I got an appointment to Hahnemann for Monday morning, figuring I'll come to the office (with Ken) sometime in the afternoon - so I can complete an outline for a presentation I won't be able to give in person Tuesday. Called the courthouse and got out of jury duty (Something good has come of all this! I figured telling people you're about to have brain surgery should get me somewhere...). Then there was Bayshore - the machine was down, not to be repaired before Monday (9/13). Finally got thru Wed. morning - machine got fixed Tues., but the new phone system (by Sprint) blocked my office number, so no one could contact me for an appointment. Could I come in at 1? Somehow, I managed to get my part of the project completed by 11 a.m., so I could get out by noon. At least the test went well (first time the technician actually told me things looked good!). Whew!
I entered Mt. Sinai on October 13, 1993. The place had changed tremendously in 12 years! The Hausman Pavilion was gone; replaced by a stunning atrium. The underground corridors, though, were as confusing as ever. I was placed in a room overlooking the George Washington Bridge. The lights looked impressive in the dark, clear, evening.
A parade of doctors and nurses came through the room to lend their unique perspectives on what I had to look forward to. I had finally come to grips with the term "brain tumor" being associated with my case. Ken had stumbled upon an internet mailing list devoted to brain tumor support around this time. He discovered that, technically speaking, any tumor that involved brain cells could be classified as a "brain tumor." Here we go again: I'd gone from "cancer in the lungs, but not lung cancer" to "tumor on the brain, but not brain tumor." Sheesh.
Eventually, Dr. Sen and Dr. Urken each stopped by to answer some of my final questions. Ken spent the night in a tiny (albeit expensive - even at "hospital" rates) hotel room a few blocks from the hospital.
Surgery took place the next day. As Ken summarized it for the internet list we referred to as The Sick List (in part):
Helena had her surgery today (10/14/93) and came through very well. She was taken down (actually across) at 7:00 a.m. (I got to the hospital at 6:30 a.m.). I was allowed to accompany her to the holding area before she was taken to surgery. Surgery was scheduled to begin at 8:00 a.m. We finally saw the neurosurgeon at about 3:30 p.m. and he said that he was able to remove the whole tumor and they couldn't find anymore cancer cells in the vicinity. (yay!:-) ) The other surgeon who did the reconstruction came to see us at about 5:00 p.m. and said Helena did fine. I finally got to see her at 6:00 p.m. while she was still in the recovery toom while she was waiting for a bed in the surgical ICU. She will probably be in the ICU for about one day and then will be moved to a normal room on Saturday.
I usually don't have any pre-conceived notions over how long surgery will take, or how I'm going to look/feel when it's over. This time around, I did ask - and Dr. Sen informed me that I'd wake up with my head bandaged up. Armed with this little hint, I now only had two thoughts as I entered this unchartered territory:
- Since the 1981 surgery took 6-and-a-half hours, I figured anything less would be amazing.
- As long as I didn't have to awaken with a breathing tube in my throat, I'd be happy. That unpleasant memory of Round 3 still lingered.
As it turned out, it was the anesthesiologist who best estimated the time I'd "be under" for the operation. You can imagine how happy I was to open my eyes at 4:45 p.m. (so the staff informed me) to see the last of that dreaded breathing tube being pulled from my throat!
Meanwhile, there was the matter of keeping everyone in the waiting area occupied. Of course, after three lung surgeries, Ken and our respective families had become all too familiar with the "routine." However, this time, the venue, doctors, and circumstances had changed. Since Ken now carried a beeper for work, he told me he had contemplated giving the hospital staff its number. This way, he could be called if he decided to take long walks in Central Park (across the street from the hospital) - and escape the constant barrage of anxious questions. ("Why don't you ask how she's doing? How much longer?")
No, Ken didn't walk away this time. For one thing, Mt. Sinai had a lovely waiting area in the atrium where the Hausman Pavilion once stood - quite a contrast to the tiny room everyone grew to hate at Bayshore. My husband also had something else to keep him occupied: our new laptop computer. I got the idea for this purchase from reading postings from Cancer Forum members stuck in "the slammer" (hospital). Also, since I was now using an internet service provider called Panix that was based in New York City, I thought having a computer in the hospital would be useful for keeping in touch with friends.
We purchased our Toshiba Satellite 1900 a week or so before I entered the hospital. Now, during my surgery, Ken could pass the time exploring some of the free software that came with the machine; being the "old-fashioned hacker" he is (before hacker became a bad name). In the end, he played "a LOT" of electronic Solitaire.
Things became interesting in the waiting area once Dr. Sen emerged from the OR. Ken doesn't have the best memory for linking names with faces. (He often jokes it's one of the reasons he married me, as I'm usually pretty good at this.) Since he'd met Dr. Sen only once - when the doctor was dressed in a business suit - he couldn't recognize the gentleman in the surgical greens who came over to tell him how my operation was going at that point.
"But I want to hear it from the doctor," Ken pleaded.
"I AM the doctor!" Dr. Sen replied. Oops.
Fortunately, Dr. Urken's appearance a few hours later went much more smoothly.
By about 6 p.m., I was able to see Ken, my mother, and my sister in the Recovery Room. I guess I was a bit paranoid about being coherent and "sharp" following surgery. Ken later told me, "they couldn't shut you up in there." Actually, my mouth was very dry - much more so than usual - as I came out of anesthesia, so I kept begging and begging for ice chips.
It took a few hours, but late that night, I was finally moved to the Surgical Intensive Care Unit (ICU). Of course, it was dark (save for what little light there was illuminating my bed in the room), and I didn't have my glasses, so I couldn't see very much. However, they did assign a gorgeous young blond Swede (from Stockholm, no less) named Henrik to watch over me - I never did find out whether he was a medical student or a resident (I imagine the latter). All I could think of afterwards was telling my sister, "If you thought Dr. Urken was cute, you missed Henrik." I got through a fairly uneventful night, save for more begging for ice chips or lemon-flavored swabs - anything with moisture.
Friday morning arrived, and with it came Ken and my brother (who flew up from Florida). I got my glasses back, and I could watch some TV. The medical personnel came in and out to do whatever they had to do to me. I had two teams dealing with me: The ENT Team and the Neurosurgery Team. Eventually, I began to wonder whether I should've kept a scorecard handy - each always wanted to know what the other was doing or saying to me. I began to feel my way underneath the bandage around my head. I felt a tiny rubber band surrounding a small section of hair. "OK," I thought. "They sectioned my hair for the surgery." I can't say I was very surprised...
Alas, by late in the afternoon, all those ice chips finally got even with me, and I began to throw up - just enough to become a nuisance. In spite of all that, I was moved around 6 p.m. to the "Step Down Room" - an intermediate stop before eventually moving to a "real" room. I managed to "announce" my arrival with yet another bout of nausea - fortunately, that turned out to be the last one.
The Step Down Room was aptly named, I thought. It was probably the most depressing place I stayed in during this go-round - not quite as bad as Hausman, but hardly pleasant. There were six beds, of which three were occupied - one by an old woman who constantly kept yelling for a particular nurse. At least there was a TV over the bed to help keep my mind off things (as much as one can expect at 5 a.m. on a Saturday). Dr. Urken eventually stopped by and said I looked much too well to stay there. "We'll get you out real quick," he said. Not quickly enough, though - I spent all day Saturday there too.
On Sunday morning, I was finally deemed strong enough to attempt to get out of bed. My first walking test was negotiating the 20 feet (or so) to the lavatory - amazing what can feel good after being confined to bed! I finally got into a real room that afternoon. I got the "window" spot, overlooking Madison Avenue. I could watch Metro North trains move along the elevated tracks in the distance; and there was another bridge nearby that added to my view. Later in the week, I was treated to some lovely sunrises.
Reality slapped me on Monday morning after the bandage was removed from my head. No, I didn't look - I didn't have to. The cleaning lady came in, took one glance at me - and began moaning all sorts of gospel-sounding things. I felt around my head - I had assumed my hair was sectioned from my earlier "investigation," but I didn't expect to feel braids! My head was now a combination of Sinead O'Connor (shaved on the right side, where all the "work" had been done) and Farina from "The Little Rascals" (all those braids). To "top" things off, thanks to the scalp rotation, I'd become something of an "off-centered Conehead." (Want to see what that's like? Take a piece of fabric from your sleeve between two fingers and twist it.)
I called Ken, who was now working in Lower Manhattan. "Before you come here, you will stop by Woolworth's in the World Trade Center," I instructed. "You will pick up a wide-toothed comb and a turban. I've just grossed out the cleaning lady." I'm sure this thrilled him to no end.
Ken arrived later that morning, and began to try and untangle my hair. This became somewhat amusing (After awhile, all you can do is laugh!): More than once, he managed to "untangle" hair that wasn't attached to anything! In preparing me for surgery, they must have cut hair without moving it away. "Oh well," I mused. "They're surgeons - not beauticians."
Once I was made to look a little more presentable, it was time for what became the morning constitutional - a walk around the floor. It felt good to finally be able to move around like a normal human being (albeit slowly)! The nurses eventually got wise to this routine - they knew when to expect Ken to show up, and that we'd take a walk when he arrived.
On Tuesday, Ken brought the laptop to the hospital. Although he figured out how to set it up, Panix wouldn't cooperate. You see, that was the week the internet service provider experienced a major security breach. (News of this even made the Wall Street Journal!) As a result, I wasn't able to access that account for another three days. However, I could nominally keep up with co-workers via ATTmail; and I could send greetings to the Cancer Forum via CompuServe. My "toy" also seemed to attract several curious doctors and residents to my room.
I began to adapt as best I could to the hospital schedule. The first resident stopped by to examine the dressing on my right leg around 4:40 a.m. (One reason the surgery took so long was because the surgeons had attempted to graft skin from my thigh onto my head, but it didn't work. They needed to use "donor skin" to complete the procedure.) I usually gave Ken his first "wake-up call" around 5; with a follow-up a half-hour later. (He usually took a 6:30 a.m. train to NY.) Fortunately, Mt. Sinai keeps patient room phones turned on all day and night (unlike Bayshore, which had limited hours)! I often used the laptop during the early morning hours as well. The doctors usually began visiting around 6 or so. Since our alarm normally goes off at 4:30 a.m. (in hopes we get going by 5), this didn't bother me very much.
What did bother me, though, were the late breakfasts - alas, I didn't find out until I was nearly ready to go home that I could've requested an early tray. Having to wait until 9 when I was used to eating between 5:30 and 6 a.m. was rough! To compensate, I ordered an extra roll and juice with dinner and stashed them away in the nightstand for noshing after the doctors were through with their early morning visits. My weight still hasn't quite recovered from this - and the yummy brownies from the hospital's kosher kitchen didn't help matters any! (And I usually lost 5 pounds when I had lung surgeries!)
Recovery seemed to be going quite well - until Friday. The area of the thigh affected by the failed skin graft developed an infection. Putting weight on that leg became a little painful. I was placed on intravenous antibiotics.
In spite of this, Dr. Urken and The ENT Team marched in early Saturday morning to inform me that I could go home. A visiting nurse had been ordered for me anyway, so he didn't see the infection on my leg as a deterrent. I called Ken with the good news.
The euphoria was short-lived. About 20 minutes before Ken arrived - while The ENT Team was completing the paperwork for my discharge - The Neurosurgery Team stepped in. They weren't comfortable with my leaving just yet - especially since Dr. Sen had been away all week following my operation. I finally broke down for the first time. I spent the rest of the weekend with more bandages and antibiotics.
Dr. Sen finally came back to see me on Monday and cleared me for discharge. I left the hospital on Tuesday, October 26, 1993.
It was time to make adjustments once again. The area where my glasses rested appeared to be the point where the original skin graft from 1981 met the new graft, so they had to be adjusted to sit on my head properly. Once again, my eyes were "going out to lunch." Although my energy level was compartively high - probably attributed to the constant exercising I managed to get in before surgery (I was able to complete my entire workout for the first time in months only a few weeks before the surgery.) - my thigh occasionally hurt when I tried to walk. As my thigh began to heal, it began to itch uncontrollably - one could almost set an alarm for 2 a.m., when I'd awaken in agony.
Perhaps the hardest adjustment was dealing with a visiting nurse, whose main purpose was to keep an eye on the leg infection. Her scheduled arrival was 10 a.m. - that was usually the time that I had taken my morning nap while recuperating from the earlier operations. Fortunately, my leg "behaved," so she only stuck around for the 5 days my insurance would cover.
It was also time to get a wig. Although I've been accused of having several talents, hair is NOT one of them! However, I could handle the turbans I brought home from the hospital only so much. I managed to find a helpful person in a local beauty supply place, who was able to find me something suitable. As I described it to a friend in e-mail (in part):
I got a wig...and we're slowly making friends. I have absolutely no talent for hair, so pinning existing hair up so I can get the darn thing on is something of a challenge. On the other hand, I may as well get used to it - I'll probably have to deal with it until summer (but hopefully no longer than that).
The best thing I can say about the wig is that it helps the eyeglass situation a bit. I can wedge that right earpiece that's giving me trouble thru some of the elastic mesh and my glasses are almost straight.
It wasn't long before I needed to return to New York for check-ups. As I e-mailed The Sick List (in part):
November 2, 1993:
Greetings - from the patient this time!
We just got back from the 1st post-op visit with the ENT, exactly one week after being discharged. He took out the last of the stitches from my head, removed the dressing from the section of thigh used for the skin graft, and generally pronounced me ok. :-)
In other words, I can continue to progress toward normalcy. First on the agenda (ok, later tonite) is a "real" bath. "Real" hairwashing to eventually follow - gotta keep Ken in practice! ;-) Even more amazingly (to me), the ENT doesn't want to see me again til after the first of the year. So, the next phase - that is, adjustment of the reconstruction to the head - will probably take place during the 2nd half of January.
Next on the post-op agenda will be a visit to the neurosurgeon on Wed., Nov. 17. Hopefully he'll be equally pleased and I'll be able to return to work as planned (by me) by Thanksgiving.
November 18, 1993:
Saw the neurosurgeon yesterday. He's very happy with the way things are going, and has allowed me to begin returning to work whenever I feel ready to do so. I'll probably make my first attempt Monday - get in around the usual time, then leave after lunch to sleep; if previous events are any indication. Hey, gotta start somewhere.
During that visit with Dr. Sen, I was taken off Dilantin - months earlier than expected. Even though I was taken off medication, I wasn't 100 percent yet - as I described in e-mail: (in part)
I'm beginning to discover the minor neurological blips I was warned might happen: Balance is sometimes awry (round dancing made that known), sentences sometimes get derailed, reaction time on the dance floor is just a tad off. However, it doesn't appear obvious to anyone else but me - and it really is just a little. The neurosurgeon has assured me that this will eventually disappear.
Dr. Sen eventually discharged me in January, 1994.
I returned to part-time work on Monday, November 22, 1993 so I could work 3 half-days before Thanksgiving. I worked 4 more half-days the following week - and then it was off to San Francisco.
Although this trip turned out to be a much-needed break for both of us, in retrospect, it may not have been one of my wisest moves. My stamina hadn't quite returned yet - and I didn't help matters any. I ended up going to 3 square dance workshops - in addition to the appearance at Stanford Quads with Ken we had planned in advance. (After I attended the first workshop, dancers offered me rides and/or mass transit escorts to the other two. How could I refuse?) As a "bonus," Roger (who once sneaked in to see me in ICU at Bayshore) and his fiance Susan - who were now living in Portland, OR - flew down to spend a day with me hiking around Fisherman's Wharf and Ghiradelli Square. (Ken managed to take enough time off from sessions to join us for dinner.) Needless to say, by the time Ken's conference ended on Friday, I was exhausted (much to his chagrin). Nevertheless, we did make our first trip to the Wine Country (Sonoma) on Saturday - and learned enough to know we needed to return someday when I was healthier!
I went back to full-time status after returning from San Francisco - and promptly landed on a major project that later became "AT&T True USA Savings." I felt AT&T got back all the time I spent on disability within a week.
At the end of 1993, I was still desperately trying to get along with that wig. In an effort to obtain some free advice, I decided to attend a "Look Good, Feel Better" program sponsored by the local chapter of the American Cancer Society. As I posted some time later to the Cancer Forum (in part):
Threre were four of us in the group. The other three were in various stages of hair loss from chemo. Although I wasn't getting either chemo or radiation, I had enough "war stories" of my own to fit in :-)
The session was led by an ACS rep, along with a local beautician (who handled wig stuff) and a Mary Kay representative (who handled skin care and maekeup). Learned a bit, enjoyed an afternoon of mutual discussion, and came home with a bag of sample cosmetics and some used turbans from the donation heap.
If you don't attend an in-person support group, or don't necessarily feel the need for a long-term involvement with one, this might fill the bill. I'd recommend it to others.
If nothing else, the wig and I became less adversarial. And, I'm still using some of the makeup tips I picked up that afternoon.
I finally scheduled my last surgery (to this point) for St. Patrick's Day, March 17, 1994. I told folks the surgeons would be dressed for the occasion ("Wearing of the Green" anybody?). For once, this was truly Same Day Surgery! For this reason, we decided that the parents didn't need to be around.
As Ken posted to the Sick List, in a message titled "The Latest Round":
In case some of you didn't know, Helena needed some minor surgery to, as she has said, "straighten out her head." Actually it was needed to smooth out a bit of scalp that was clumped on top of her head after the last surgery.
She had the surgery this morning, and true to the doctors' word, was able to come home this afternoon. The surgery went fine and we'll know how much more hair coverage she'll have when I remove the bandages tomorrow. She will be staying home tomorrow and will go back to work either Monday or Tuesday.
She will probably follow-up on my message when she feels up to it.
Our frequent joke before this surgery was that "straightening out my head" was "Mission Impossible." Since then, we've often referrerd to this operation as "the head fix."
March 17 turned out to be Storm #17 of that infamous winter of 1994. In spite of oversleeping, and the weather, we made it to Mt. Sinai by 6:40 a.m. I was taken for surgery within the hour. Dr. Urken woke Ken up (literally!) by 9:30 a.m. I was able to go home by 12:45 p.m. This was amazing!
As I reported in e-mail the next day (in part):
Well, things are getting better: Breakfast has managed to stay down so far (nothing much wanted to last night), this eyeglass band is enabling me to see well enough to function for reading and computers, and I can get around pretty well around the house.
Next challenge is for Ken to get enough nerve to remove this head wrap. I think I've finally given him a reason to get it over with: the sooner he does so, the sooner I can call the doctor to make an appointment to get the stitches out in 2 wks. You see, they taped over my one ear, making eyeglass wearing and phone use more challenging than usual.
The next steps, in brief: No wig-wearing until stitches come out, no hair-washing until Monday at the earliest; otherwise not much in terms of restrictions. Can't complain.
Ken was able to find a cheap athletic band for my glasses. Although I initially thought this could be the solution to my now long-standing problem with the crooked glasses, I soon discovered that this only works on "smooth" surfaces - like bandaged areas. Once the bandage was removed from my head, I never could adjust the thing properly. Either it was too tight to be comfortable or too loose to be useful. It would be some time before I finally faced the "obvious" solution.
Even though this last operation was comparatively minor, it still took something out of me. Of course, I didn't help matters any: I spent the following Monday afternoon participating in a 5-hour training document review via speakerphone in the bedroom. Needless to say, I wound up taking an extra day off to recuperate from the effects of that escapade!
Dr. Urken removed the stitches on March 29, 1994. I never thought I'd be so happy to return to the wig! Now I could go back to workouts in the fitness center to (once again!) regain my stamina. As my hair began to grow, I could begin to contemplate my next hurdle: eliminating the wig altogether. I eventually decided that I would conduct an "experiment" at the National Advanced & Challenge Convention that June in Virginia Beach: I would go around without any headcoverings during the day. If I didn't gross out too many people, I would return to work following vacation "in real hair," as I told my co-workers.
The experiment was successful; and I formally got rid of the wig in July, 1994 - just in time for the hot summer!
Although my life was finally beginning to return to normal, some other concerns remained (aside from the periodic CT scans). For one thing, there was the matter of my vision - again. Although the "head fix" enabled me to wear my hair short for the first time in many years, it also caused my glasses to sit perpetually slanted on my nose. Because the center of my right eye no longer viewed the center of its eyeglass lens properly, I suffered from frequent headaches - again. I asked my eye doctor about this during my regular checkup in June, 1995. He told me that if I needed it, I could have the lens of the eyeglasses "rotated" to accommodate the slant.
With that piece of information tucked away, I decided that it was time to ask Dr. Urken whether any progress had been made in ear prostheses since I lost the ear in 1981. Back then, I had been told that plastic surgery was too involved for the scant gain it would produce. If I wanted a "fake ear," I was told then that I could glue something on. I referred to this solution as "Mr. Spock Ears."
When I asked Dr. Urken about this at my July 1995 checkup, he immediately referred me to a specialist in this area who was about to join his practice (what timing!). As I posted to the Cancer Forum (in part):
Anyway, after a brief discussion of my case (a few minutes on the phone with the doc while we were madly taxiing there, followed by time with me), he described his proposal for an ear prosthesis. While a few steps up from the "Spock ears" I recall hearing about years ago, it's a solution that doesn't really appeal to me. Given how much I hated dealing with a wig for 7 months, I can't see being thrilled with thoughts of gluing, shaving - and replacing stuff every 2-3 years. Plus, the doc didn't seem totally assured that this was THE solution for me.
So, after some discussion over lunch, Ken & I decided that we'll try to make time to see the optician and have the lenses of my glasses reground - they call it "rotating" in the trade, I understand.
The procedure leading to the "proposed solution" involved a series of about a dozen outpatient visits to eventually create a mold of this prosthesis. Since the glue used with the prosthesis is water-soluable - and given the sweat I usually experience on that side due to my missing parotid gland - I wasn't thrilled with the idea of going from no ear to one that could "travel" around my head.
Unfortunately, due to my overload at work, it took another year before I finally had the time to return to the optician for the alternate solution. By then, my headaches were worsening, so I needed to have my eyes checked first. Although the doctor was willing to have me try bifocals in spite of the supposed atrophied muscles in the right eye, the optician took one look at the perscription and my history and promptly vetoed that bright (!) idea. Yes folks, it was back to "dueling eyeglasses." Much as I despise going around with two pairs of glasses (must be revenge from hating to clean my glasses when I was little!), it didn't take long for me to notice the difference. The headaches promptly disappeared!