by Taylor Black
Taylor agreed with me about angels and then asked, “Have you ever wondered what life would be like if you hadn’t been born, Dad?”
I remember telling her, “I guess you wouldn’t be here then either.”
Her perplexed face told me that was something she hadn’t considered. Her existence was predicated on my own. “Wow!” she finally said. “I didn’t think of that.”
“Boo!” I hissed at the screen, for Mr. Potter has made his first appearance. Long before there was the Grinch, there was Mr. Potter. Lionel Barrymore, Drew Barrymore’s ancestor, made a great villain.
“Do you think Mr. Potter is that way because he can’t walk and he takes it out on everyone else?” Taylor asked me.
I had never thought of that before. I had merely thought of Potter as a Christmas villain. A person didn’t need to analyze with a Frank Capra film, one only needed to “feel.” “Maybe,” I replied, wondering where she was going with the thought. Then she added, like the knee-jerk liberal that she was,
“That’s wrong. He shouldn’t take his pain out on others.”
“You’re right.” I agreed.
“I wouldn’t do that if something happened to me.”
“No I don’t think you would, Taylor. Not you.”
Courtney joined us in the living room and rolled her eyes at the television screen. She was sixteen and a tad more cynical than either Taylor or I.
“Geez, guys, that dumb movie again.”
“It’s Christmas, Courtney,” Taylor said.
“You two are sentimental saps,” Courtney said, but it was a seasonal criticism with a pinch of love. And after a few minutes even the jaded Courtney was into empathy for George Bailey’s plight.
“Potter is a real creep isn’t he?” Courtney said. “Has Uncle Billy lost the money yet?”
I remember deciding to try for a teaching parallel, “Have I told you girls about the story of Neil Bush and the Savings and Loan? And how that scandal of George Bush’s son parallels the Bailey Building and Loan?”
“Shhh,” they whispered in unison. There was no time for a social studies lesson during Christmas vacation. School was out!
My daughters had ganged up on me again and were in the separate sister world that they seemed to inhabit; when they were younger and wanted to exclude me by speaking gibberish. When they spoke their own special language I felt as powerless as a Japanese code breaker trying to decipher Navajo during World War II. Sometimes I think the two of them were actually twins for they were as close as the identical twins, Jenni and Beth.
And today Courtney and I talk about Taylor, and Courtney claims to channel her sister and sometimes I feel the same, especially when I’m driving the Tercel with her rosary beads on the stick shift, which are there more to comfort me now than as remembrance of things past. I hear a Hi, Pops, in my mind. Then Taylor and I are back watching George Bailey once again, sharing a bowl of microwave popcorn. It Was a Wonderful Life, wasn’t it?
* * *
After the mad dash to the airport and the return trip to South Florida, Taylor and I prepared for a return to Duke and the stem cell harvest. The idea was to take some of Taylor’s stem cells and freeze them and then use them after chemotherapy to bring back her immunity system. I was never comfortable with chemotherapy for it seemed illogical to treat cancer by injecting toxins into a patient’s body, but I certainly didn’t claim to have a better idea.
Taylor’s Diary
January 30, 2001
Today I get a Broviac Hickman port installed (at least that’s what I think it is). What it is is annoying. It is two 6 inch tubes hanging out of my chest. They use it for the stem cell harvest, so it will only be in for a week or so. Thank heavens!
Anyway, it was an outpatient surgery so it only took a couple of hours, which is always a plus. Other than that I just hung out w/Karly and Gia awhile and got caught up. It was nice. And then the munchkins came by. Kristine (Taylor’s sister-in-law and mother of her little nieces) asked me to be Godmother for Anya which, of course, I happily accepted. Then later in the evening Katie and Karly came over and we just talked for a couple of hours. In all it was (besides the “procedure”) a very comforting day.
Apparently I go back to N.C. on Thursday and I have to stay up there until next Fri.! I’m not sure how long of down time I have between that and my migration to Gainesville (we arranged for radiation to be given at the University of Florida’s Shands Hospital with sister Courtney becoming the caretaker). Hopefully a couple of days. I’m really not gonna see Jeff much for a long while and on top of that right after graduation he is moving to North Carolina, so I guess we’ll take it from there. I don’t really have much to say about life, except maybe that I’m not very insightful. On another note, I am getting very frustrated w/myself because it always seems that there are the little things that I mean to do that slip through my fingers day after day.
Am I that much of a flake? I am starting to get fed up w/the whole “cancer” thing. (Strange as it may sound). I’m getting annoyed w/doctors, hospitals, antibiotics, needles and so forth. This is a problem because I know if I let myself become bothered by all of it then it will only make the time absolutely wretched. So, I must consciously (sp?) keep a positive outlook. I mean there are worse things in life. This is only a brief period. Always remember that!
Two days later Taylor and I were off to Duke. The National Children’s Cancer Society secured a room for us in Durham at the University Inn, across the street from the Duke Hospital. The National Children’s Cancer Society helped families at Duke and other hospitals and the cost savings were a Godsend.
Most HMOs wouldn’t cover stem cell harvesting, so it was a good thing that Taylor had a PPO insurance policy with Celtic for Kids out of Chicago, which turned out to be a great insurance company. The last thing a parent wanted was an insurance company to deny coverage to his child for a procedure which might save her life.
The McGovern Children’s Hospital at Duke was a kid-friendly place with an open air design and see-through elevators—mobiles right out of the Calder catalogue. Orange, red and yellow flower mobiles hang from the ceiling.
There was an Islamic woman in a veil seeking help and speaking, appropriately, Arabic. People come from all over the world to be treated at Duke because of a Dr. Kurtzberg and her work on fetal cord blood.
But we were there for “pheresis” as stem cell harvesting is known. The medical technician took cells out of the patient’s body, froze them and then returned the rest of the blood back to the patient. Taylor was instructed to bring plenty of Tums for the calcium in the tablets helps with the discomfort of letting one’s blood be sucked out and recycled.
And then the game plan post pheresis was that Taylor would receive radiation for six weeks and then a transplant which would require 28-45 days at Duke in isolation as she would have run the risk of infection for 3-6 months.
Taylor sat in a room with a teenage boy from Cleveland, who was suffering from medulloblastoma, as both of them were having their blood drawn out. She read from Harry Potter and the Goblet of Fire. Thank God for Hogwarts. At least Taylor was able to escape into J.K. Rawlings’s fantasy world.
Taylor’s Diary
February 3, 2001
I write to you from the icy land of Durham. Yes, my father and I have come for the stem cell harvest (pheresis). Well, that takes place on Mon., Wed and Fri., for about 3 hrs. or more a piece. I have to sit in a room while they collect my stem cells.
(I have to get my Nupogen for the first 3 days prior and then all the week of pheresis).
So, other than that we are pretty much free which I love, disliking hospitals so much and all. But, wouldn’t you know me? I have to go and have low hemoglobin which means I have to get a blood transfusion before the whole procedure. I did that today. In there I met a very nice guy named Tristan. He has medulloblastoma (brain tumor found in the base of your head by the brain stem). His had also spread to his spine. He was diagnosed in the Jan. befo
re this and since has undergone chemo and radiation, two rounds of pheresis and is currently undergoing more chemo. He was very good natured. Hopefully I’ll see him around. I hope w/all my heart that he beats it.
Other than that things have been pretty dull here. I’ve been doing a lot of reading and getting lost w/Dad trying to find simple places. Tracey Dawn and Cindy are coming tomorrow, so that should be some entertainment.
Well, I’ve been here for 3 days but I still got a week to go and already I miss Jeff tremendously. I hope we can last through all the separation, but what do they say: “absences makes the heart grow fonder.” Hopefully, but they also say, “outta sight, outta mind.”
So I get back home next Sat. the 10th and hopefully I’ll have a few days before I have to go up to Shands. But that shouldn’t be too bad. Well, poor Dad, he’s such an early bird I think I’ve been disrupting his sleep because I’m up so late. On that note, I think I’ll retire.
Chapter Fourteen: I Guess It Doesn’t Matter Anymore
As I was driving the Tercel today, I tossed in a Buddy Holly cassette—yes, I still have cassettes—and listened as the legend of Lubbock crooned I Guess It Doesn’t Matter Anymore, and thought back to an incident with Taylor when I stupidly continued to be a teacher rather than a father.
A week after Taylor’s first brain surgery I took a day off from school to drive Taylor to Martin County High School so she could turn in a paper in a dual enrollment class. Dual enrollment classes were classes taught through Indian River Community College, but on the high school campuses. I taught two dual enrollment classes at my school, South Fork High School, Martin County’s rival. So we walked onto campus so she could turn in an English paper. A week after surgery and she was walking with a limp, for God’s sake. Surely a brain tumor would have been a good enough reason to turn a paper in late, but I encouraged her to get it done and turn it in. God, looking back on it, I was just like my father who forced me to play football from 7th through 12th grade even though I was a geek on the gridiron, a benchwarmer, who, during the games generally played “left out” instead of left tackle. My father had been a good football player in both high school and college and I was his last hope, being the last son he sired. Oldest brother Mike had lasted two days of high school practice, having had the good luck to obtain a concussion and consequently a 4-F for football; brother Tom, who was always able to find a way out of things and would thus go on to a successful business career, literally and figuratively ran away from football by lettering in cross country. So it was up to me to fulfill my father’s fantasies of a son winning the Heisman Trophy. I resented my father for the football obsession, and there I was, forcing Taylor, after brain surgery no less, to turn in the silly English paper, which Taylor later informed me she had finished under pain killers. My rationale was I had to continue to be my teacher self in encouraging her to turn the paper in. Any deviation in my behavior and Taylor might sense I didn’t think she was going to beat this “brain cancer thing.” That’s the way I honestly felt, and looking back, that was really a rationalization for me, part of my own denial; I was terrified that Taylor was not going to beat this “brain cancer thing” and I coped with it through her courage, not my own.
As Taylor, wearing a blue bandana head covering that would become her trademark, hobbled across the campus that day to turn in her paper, I stood stoically like the idiotic pedagogue I could be, contemplating that no student in my classes would ever have a reason for turning in a paper late if my own daughter with a brain tumor had turned her paper in on time.
And as Taylor turned the corner and limped out of sight down a hallway, I began to cry. Hell, I didn’t just cry, I blubbered like a baby, sobbing for several seconds before I regained control of my emotions. I was relieved that no one saw me as all of the students and teachers were in class. I was proud of Taylor and wondered where she got her guts. Obviously not from her crybaby father, I remember thinking. She probably got her guts from her mother. I remember thinking that my ex-wife Pam was a tough old bird, I’d give her that.
Within a week, Taylor’s girlfriends were wearing bandanas in sympathy for Taylor. It was a touching show of friendship which caught on among the senior girls and became a fashion statement at the oh so preppy Martin County High School.
Looking at Taylor’s journal now, I noticed an entry from October 18th 2000, about ten days after she turned in the English paper. It was that poem, reproduced earlier about the doctor’s “sad look upon our face.”
As it turned out Taylor received a C+ on that paper which she considered a gift considering she typed the paper’s last paragraph three times due to the influence of the Percocet.
I later apologized to Taylor for pressing her so hard about the English paper but she forgave me and laughed about it. Looking back I was sorry I was such a hard ass, but when I beat myself up, I think of Taylor as a little girl, sitting in the passenger seat of the Tercel as we shoot up Interstate 95 to Pennsylvania and Nana-land and Buddy Holly is on and Taylor is singing slightly off-key in that tiny little voice: I Guess It Doesn’t Matter
* * *
Meanwhile, back in Durham, North Carolina, things didn’t go as smoothly as planned with pheresis….
Taylor’s Diary
February 7, 2001
I know I haven’t kept update info about the whole pheresis. I guess subconsciously (and even perhaps consciously) I didn’t want to think about it. But, just to update everything now, here’s what happened. I went in on Mon. and started out fine. Then about 30 mins. into it I got a blood clot in my line. It took 2 hrs. for pharmacy to bring TPA (the stuff they use to unclot it) and then you have to wait for a half an hr., so we decided to do it the next day (yesterday). Well, about 45 mins. into yesterday the technician takes a closer look at my line and brings in a nurse technician. They discover that the “wonderful” people down @ St. Mary’s put in the wrong line. So, now I have surgery tom. To put in the right line. I can’t even tell you how much anger and frustration I was filled w/ and still partially filled w/ Now, I am not projected to leave here until the middle of next week sometime. If all goes well I may be able to go on Mon. night or Tues. And then supposedly I only have a day or two before I go to Shands (the University of Florida’s hospital in Gainesville). This is the most upsetting for me because @home I rebuild my strength (at least psychologically). Also, this means I will only get to see Jeff for about a day before I got off for 6 weeks. I don’t know. I guess I’m just really bummed because of the whole situation, and I’m really trying to look on the bright side of things because I honestly believe that negative thinking will make the situation worse. I tell myself this but then in all reality how long can you really be away from an attractive guy whose always having fun and being around girls before he wonders why he is holding on to you anyway. After all, you are just a phone girlfriend with the rare occasion of seeing him for a day or two maybe twice a month. What do I do if the probable comes to fruition? I don’t know if I’ll be able to bear it. He has been my strength in ways that others could not. I suppose in the meantime I can only hope that does not happen and cross that bridge when I come to it. For now though I will try to be optimistic.
P.S. Dad and I are going to a basketball game w/Friedman tom. night—to see Georgia play.
Chapter Fifteen: Love Is Infinite
I have a friend who used the term “I released him to his future” when talking about an employee she decided to let go, and I adopted the phrase when I referred to my divorce, that my wife didn’t divorce me but rather that she released me to my future, a future of sobriety, solvency and sanity. But one day, when Taylor was in the seventh grade, a year of worry and wonder when the hormonal changes of early adolescence were set on high, we sat at the kitchen table while Taylor nibbled away at a buttered baked potato. Suddenly, she suggested, “let’s go to Shepard’s Park and see the sunset, Dad.”
Taylor loved sunrises and sunsets, the alpha and the omegas of the day. I’m sure if she had been a
n Egyptian girl three or four thousand years ago she would have been a Ra Ra, a cheerleader for the sun god. It is interesting when children are small that they see more sunrises than sunsets, but it reverses itself in adolescence for teens prefer the sunset to the sunrise.
Shepard’s Park was a great place for a sunset and I agreed to take Taylor there, for I enjoyed the walkway out over the river. That day the St. Lucie River was tranquil as usual. Small boats with “liveaboads” were rocking gently, anchored against languorous current. Across the river the sun was beginning to dip down over Palm City. It was a postcard p.m. Taylor felt chatty.
“Dad, something weird happened in school today,” Taylor began.
I asked her to explain.
“A new girl in class.”
“Okay, so?”
“Dad, her parents live together,” Taylor said.
I chuckled. Was that it?
“What’s so funny, Dad?”
Seeing the perplexed look on her face, I recall I erased my smile and asked her to go on with her story.
“Well we all gathered around her and asked her what it was like to have two parents on your case all the time.”
Then it hit me. Most of Taylor’s friends came from “broken homes,” as my mother used to call them: children of divorce. Children from two parent families were anomalies to Taylor and her friends, except Mike and Pat Jordan. Since Pam had “released me to my future” when Taylor was only five, she didn’t remember when Pam and I had lived together.
I remembered saying something witty in response to her, something like. “Hard to divide and conquer when the parents are under the same roof, eh?”
“Yeah.” She responded.
“Are you sorry Mom and I aren’t together, Taylor?”
“Heck no,” she said with a smile I considered a bit too mischievous. “I like it better this way.”