by Taylor Black
Which I knew translated into: I can get away with anything at Mom’s. Her mother had a more laisseze-faire attitude toward child rearing, but after seven children perhaps her child raising might have been viewed more or less as a survival tactic.
“But the new girl…” Taylor went on, “it was as strange that her situation wasn’t normal for my group of friends. Most kids go back between a mom and a dad. That’s what seems right to us.” She thought for a moment and then changed the subject, “The sunset is pretty isn’t it, Daddy?”
It was what the ad man might have dubbed “a Kodak moment,” father and daughter admiring the sundown together, but there was no photographer to snap a picture for posterity. I wish there had been. And she called me “Daddy.”
“Daddy!” She hadn’t called me “Daddy” in quite some time. I put my arm around her shoulder and smiled as the sun went down.
“I love you, Taylor,” I said.
“I love you as much as infinity,” she replied, and for the next couple of years she would add infinity to her love. When I think of her sisters with their infinity tattoos I am reminded of Taylor’s “I love you infinity, Daddy.”
And now she is with infinity, with the Alpha and the Omega, her day is done, her sun has set and she is with The Son. She is with the Infinite. It was a divine calling.
Taylor’s Diary
February 8, 2001
Today I had surgery for the new line. Let’s hope this is the right one. (It was). My chest is still sore but, that is to be expected. I slept for a few hrs. in the afternoon and then Dad & I went to a basketball game w/Friedman to see Georgia (Georgia Schweitzer was the star of the Duke Women’s Basketball Team and would go on to the W.N.B.A.). She was great, but unfortunately they lost to FSU by 2 pts. A really unexpected outcome to the game. After that I went to 5200 (the isolation ward at Duke Hospital, made possible by a gift by Perry Como and his wife) to get my shot. I believe the nurses are getting frustrated that I have to keep going there for it. (Because her father was a wimp who couldn’t bear to stick a needle in his daughter’s arm). But, Beth’s coming Sat. so hopefully we can get some GCSF so she can give it to me here. Well, it’s been a week since we arrived and it feels like eternity. But, I guess I better change my mindset cause I’m gonna be here awhile longer. Jeez, I don’t know what I’m gonna do when I have to stay a month. I met a woman tonight (on the floor) whose precious little daughter has cancer; it’s been in remission now for 15 months. She was telling me about her daughter’s diagnosis and treatment and all she had been through. God bless her! Children, especially very young children, that have to go through this ordeal are without a doubt angels. There is no other way they would be able to prevail. From what I have seen in the brief time I have been experiencing this (compared to others) there are definitely many angels here on earth.
It was a sad day for me two days later when I had to wake Taylor to accompany me to the airport. I had to get back to work. My job was essential as I had to pay for the insurance. Sister Beth was relieving me.
Beth and her twin sister Jenni had been very close to me. I met them at age 3 and they were my daughters (technically stepdaughters) from age 3 to 12. When Pam and I divorced, she cut off my contact with the twins. But Beth had moved back home and I made a phone call and helped her get an interview for a teaching position; Taylor’s illness had a positive effect in one sense as I was able to see the twins again. Beth had sent me an “amends” letter, apologizing for the way I was treated. She had been out on a date and her date bought her a York Peppermint Patty and she burst out crying, because that was the candy I bought her and Jenni after school when she was a little girl. A flood of memories engulfed her: her loss. My loss. Jenni would send an “amends” letter as well.
Anyway, as Taylor and I waited for Beth to fly in and me to fly out, I felt like a deserter. My daughter was crying. The medical screw-ups forced Taylor to stay longer and for me to return. And Beth to ride to the rescue.
When Beth appeared, Taylor turned the faucet off, but I still felt guilty.
Chapter Sixteen: Are They Filming a St. Jude’s Commercial?
After Taylor’s first brain surgery we were referred to the St. Mary’s Pediatric Oncology Unit in West Palm Beach to begin chemotherapy. In retrospect I wonder if Taylor should have received radiation treatment before chemotherapy but the protocol was determined by Dr. Henry Friedman at Duke University, and even though I would receive a post 60 Minutes letter from Taylor’s original neurosurgeon, Dr. Michael Paul, questioning the treatment, in 2011 the whole discussion is rather moot. After all, it was Dr. Paul who recommended the cancer team at St. Mary’s, and they steered us to Duke, and Duke oversaw the treatment.
My first impression of St. Mary’s Pediatric Oncology floor that first day was that I was in the middle of a St. Jude’s Hospital commercial, sans violin music, and I thought at any moment Marlo Thomas or some has-been TV actor or a D-list celebrity would pop out into the hospital corridor with a canister, pleading for a contribution. Was this what hell was like? Bald children? To a parent, bald children can be more frightening than all of Dante’s circles of perdition.
But you wouldn’t have known this was hell from the kids.
Tiny tots with their eyes all aglow were not having trouble sleeping, they were navigating the floor, rolling their aluminum stands with the IV bottles attached. Playing videogames! Listening to music. Smiling and laughing. What was wrong with them? Were they oblivious? Maybe not, I thought. Don’t they have cancer? Shouldn’t they be in their beds worrying about dying? Like grownups would? Of course, there was no need for background violin music or Marlo and her guilt-trip groupies, for these kids pulled at your heartstrings without the need of orchestration or a voice-over.
I couldn’t walk down the corridor without getting a lump in my throat. Here were the hopes and dreams of so many families, the boys and girls of today who had been sidetracked on their journeys to become men and women of tomorrow. Many wouldn’t make it to voting age, their first beer, or even to a driver’s license or a senior prom. And yet they were cheery-faced, happy with this day, living in the moment, truly living in the “Now” as my twelve-step program preaches. This was a place where children stayed and it wasn’t hell at all, it was hope, and it was staffed by those everyday heroes, the floor nurses, women who were overworked and underpaid. Doctors were often haughty, nurses had heart. Why was it nurses aren’t more appreciated?
Pam, Taylor, Courtney and I met with the “team,” a group of doctors, nurses and social workers. There was a blackboard with the chalk outline of a skull. Welcome to Brain Cancer 101 and the cancer classroom. Please find a seat. Dr. MacArthur drew a brain inside the chalk outline of a skull to show us the location of Taylor’s tumor and listed the negatives of chemotherapy.
Leukemia as a side effect! That’s pretty friggin’ negative!
I don’t remember much after that little “side effect” although I did perk up when Dr. MacArthur mentioned “sterility.” God, I thought, she will contract leukemia and wind up sterile. Hell, let’s have chemotherapy, it really sounds like a winner to me. The doctor then asked, “Are there any questions?”
I remember asking, “What good does chemotherapy do?”
“It kills the tumor,” the doctor replied, looking at me as if I were an imbecile. And in fact, I was an imbecile, at least when it came to brain cancer. But we would learn the chemotherapy didn’t do any good, not in all of its various forms. And in the end, Taylor realized the inefficacy of chemotherapy and refused to have any more of it, for the only thing it did was make her nauseous. Today a friend of mine, suffering from cancer, told me there have been great advances since 2001, but I still wonder. The concept of killing something by poisoning the patient’s body makes no logical sense to this layman.
I know I am not a physician and don’t claim to be all that bright, but I keep thinking perhaps that someday someone will look back on chemotherapy as we now look at the practice of bloodletting. B
enjamin Rush, the most prominent American physician in the late 18th century, was a great believer in “bleeding,” but I would be deathly afraid to go to Dr. Rush today for treatment.
I would have a different opinion of chemotherapy had it worked for Taylor and in the end of her life the doctors were administering the same form of chemotherapy which had failed in the first month of treatment. And what I have learned about the definition of insanity is: trying the same thing over and over and expecting different results.
Surgery worked as far as that goes. Radiation slowed the tumor down, but chemotherapy turned out to be a bust.
Two weeks before she died, I had to intervene on Taylor’s behalf as the oncologist at Martin Memorial continued the chemotherapy protocol which was still on her charts even though they had an incorrect diagnosis of medulloblastoma.
“Dad,” Taylor said to me, looking to me for help. “I don’t want any more chemo. It doesn’t work and it just makes me sick.”
I knew I had to do something, anything to help her. “Okay, Taylor,” I said and called the nurse in. I remember that moment as if were this morning.
“Nurse,” I said. “Taylor is 18, of legal age, and she has something to say that I want you to put in the chart. Go ahead Taylor.”
“No more chemo. It just makes me sick,” Taylor said angrily from her hospital bed.
“Will you please note her wishes on her chart, nurse?”
“Yes sir,” the nurse said.
And from that moment on, for the brief remainder of her life, Taylor never took chemotherapy again.
* * *
After the pheresis at Duke, Taylor would make it back to Stuart in time for Valentine’s Day. Ever the hopeless romantic, Taylor had a few short days home before she had to go off to Gainesville for radiation.
Taylor’s Diary
February 14, 2001
Happy Valentine’s Day!
Actually, this has been the worst V-Day ever. But we’ll get to that later, first I will catch you up on the past week. Dad was relieved of duty by Beth and Tracy C., Tracey Dawn and Cindy all came into town. It was rather an enjoyable weekend. Then we wrapped up the pheresis on Mon.& Tues. and came back last night. So, at least I’m home awhile until I have to go back to Gainesville which will probably be Mon. So, the latest news of my love life or lack thereof; let me just start by saying Jeff & I broke up.
To go into further detail: At the end of my trip (the last couple of days) Jeff was being strange every time I talked to him and even didn’t answer my calls one night. So, I didn’t tell him I came back into town but then decided to call him on Valentine’s Day. So I called, of course, he didn’t answer, seeing the caller ID. And then later I left a message saying that we needed to talk. He called me back and asked if he could come over and was really acting strange. So I looked him in the eye and asked if he had cheated on me. He laughed and said he knew I was going to ask him that. The answer was “no,” then I said, “Do you just want to date me?” He gave a stuttering answer saying, “Well, no it’s not that, but I feel guilty talking to you when I’m with my friends and it’s like I have a girlfriend but I don’t because you’re never here and I never get to see you.”
This would all be understood and forgivable if it had not been for one thing. I told him several times in the very beginning not to date me because it wasn’t fair to him and this would ultimately happen. He told me time and again that he could handle it, he was sure, and that it wouldn’t be a problem. After a lot of resistance on my part he finally persuaded me that he would see this through no matter what. This is the reason that I am so hurt and this is the reason I no longer will have him in any part of my life. He swore to me time and again that he could handle it and be loyal and faithful and then he goes and does the one thing I begged him not do in the first place. I feel absolutely awful inside and I still want him. But, I have to be strong and move on. I am not going to make that a cycle. So, there goes Jeff gone from my life forever after a few curt words and a very heated argument. He is no more. He is only a figment of my imagination of something that might have once been, a very long time ago. With that I trudge forward, dropping him like dirty laundry. Already I feel lighter. My heart is a little heavy, but my load has lightened some.
Like most seventeen-year-olds Taylor could be overly dramatic. The “forever” wouldn’t last, of course, and her relationship with Jeff would resume. It was difficult enough being a teenager. A teen was insecure and self-conscious. Throw cancer into the mix and a kid really had a struggle.
Chapter Seventeen: Timothy Trump
I was cleaning out the laundry room the other day and came upon the battered cardboard box of Monopoly. It had been sitting unused on a shelf for years, gathering dust and it seemed, holding fast to a memory, for as I opened the game there was Taylor’s playing piece which she invariably chose: the little dog. I was a “top hat” man myself: I wondered if I chose the top hat in memory of Bobby Freimuth, a boy with whom I had played a hundred Monopoly games the summer after he lost his leg to cancer.
Springfield, Pennsylvania, 1962. The Cuban Missile Crisis would come that fall and the world would sit, teetering, one harsh word from nuclear Armageddon, but in the summer of 1962, the summer in which American Graffiti is set, one-legged Bobby Freimuth would hobble around the neighborhood on his crutches to play a game of Monopoly with me. He would die in the spring of 1963, a victim of metastasis as the cancer spread throughout his body. I think Taylor was perhaps eleven when I told her the story of Bobby Freimuth during a game of Monopoly. How could I know that I would tell the story of Bobby’s cancer to a daughter who would later contract the disease as well?
I was showing Taylor no mercy in the game; I never did. Still, she was eager to play; she was always willing to play games with me. I would play chess with Taylor and remove my rooks until she got better and I removed only one. Then one day she beat me at chess with my one rook removed and that was the last time I removed a rook. She didn’t beat me after that but she was able to beat every boy at J.D. Parker Elementary and that was empowering: beating boys was where it was at in elementary school. That attitude about boys would certainly change!
But in Monopoly, she was a disaster. There was no room in Monopoly for an empathetic capitalist. Whoever heard of such a creature? She should have been confined to the low rent properties like Baltic Avenue. If Taylor were ahead in the game she’d let Courtney skip rent when her sister landed on her properties, but, on the other hand, she would never give me a free pass. I guess you might say her empathy was selective. Still, she seemed to have bad luck at Monopoly, and that particular day I owned Boardwalk and Park Place and had built hotels on each property. Taylor was already frustrated when she rolled the dice and landed on Boardwalk.
I grabbed the Boardwalk deed gleefully and read the bad news to her. “With a hotel, that is two thousand dollars you owe me, Taylor.” Then I added in my best Wicked Witch of the West voice, pointing to her canine-shaped playing piece. “And I want your little dog too!”
Taylor glared and me and looked at her paltry pile of play money. “I don’t have the money, Timothy Trump.”
I laughed at the nickname. That was pretty good, I thought. “You want a loan?”
“No,” she replied with a resigned look on her face. “I lost. You beat me, Timothy Trump.”
The teacher in me took over at that point. “You know, Taylor, calling me Trump is perfect as this whole game board was designed on the basis of Atlantic City and Donald Trump has a casino there.”
“I know, Dad, you told me a million times.”
“Oh,” I remember saying.
Her eyes twinkled and she retorted. “Old people repeat themselves, don’t they Dad?”
“You think I’m old?”
“Not too old…just old enough,” she smiled.
I wasn’t done my teaching for the day, however. “You know you need to develop your properties, Taylor. When you get a set of properties you need to build houses
and hotels. Build, build, build. That’s how I win.”
“I don’t care if I win, Dad,” I remember she replied. “I just want to spend time with you. I liked the story about your friend, Dad, the boy who died of cancer and the games you played with him. I think of that boy and winning doesn’t seem very important. You spent time with Bobby, that was important. I mean he couldn’t play sports anymore and the other boys ignored him. Just spending time together seems important. Dad, you told me the top hat was his piece and you use it every time we play. Nana said you even wrote a poem about him. Do you remember when I was little and I told everyone I wasn’t going to be here long?”
Yes, I remembered that then and I remember it now. Taylor was perhaps four or five when she told everyone that she wasn’t going to be around long. Did she know that somehow as a little child? Did her soul know a secret? I remember telling Taylor that yes, I did remember what she said when she was young. Then we put away the Monopoly box and for the next month or so, when we played the game, I was dubbed Timothy Trump. I came across the poem for Bobby a while back; my mother had kept it, and thrown out all of my baseball cards of course. I might be rich now, if it had been the other way around. But then so would every other man my age, whose mother cleaned out her attic and tossed out his childhood treasures. If I still had my Mickey Mantle and Willie Mays cards, even the creased one that I stuck in my bike spokes, maybe then I could have been a real Timothy Trump. But then, memories are more precious than money aren’t they?
* * *
After a few days at home, Taylor was off to Gainesville and radiation. She moved in with Courtney in her apartment and Courtney took the semester off so she could oversee Taylor’s radiation treatment. A big responsibility for a twenty-year-old to look after her eighteen-year-old sister? Taylor was closer to Courtney than to anyone and even at twenty Courtney was the most level-headed of seven children.