(TEDx talk, published in Cell2Soul, International User-Driven Healthcare Journal, Health Story Collaborative)
I want to tell you a story.
It took place during the radiation
phase of my breast cancer treatments.
My radiation sessions were scheduled at the same
time, every day, for six weeks. Each day I saw the same patients and the same
technicians. We were all on a first name basis. I saw the same hot
chocolate-cappuccino-coffee machine, the same cheap plastic bowl of fresh
apples, oranges and bananas, the same stack of well-worn out-of-date magazines,
the same relatives and friends accompanying their loved ones, and the same
zapping of radiation. The one thing that didn’t stay the same was our changing
bodies. We were all deteriorating. Not only was my body changing from the
radiation but also the deep chemically-induced menopause I was in, was severely
affecting my quality of life. If you can imagine how regular menopause affects
women who lose their hormones gradually over a period of years, just think how
it felt to lose mine in two weeks. I was having extreme hot flashes every ten
minutes, twenty-four hours a day, seven days a week, some so harsh they left me
faint. Menopause can also create a depressed feeling and I felt that creeping
in as well. My doctor told me that losing my hormones so fast due to chemotherapy
was doing such a job on my body, it was like driving my car into a brick wall
at forty miles an hour. I found his analogy validating because that’s exactly
how it felt. Smash! Bang! Boom!
Just to let you know, radiation in
itself is actually quite painless. Unfortunately, what happens as time wears on
is the skin that’s been radiated gets burned. Sometimes it looks like a
fashionable tan, sometimes it looks like a sunburn, and sometimes the skin gets
so badly burned, the doctors have no option but to stop the treatments
completely. That’s exactly what happened to my friend Lily. Lily and I met in
the radiation waiting room while she was being treated for breast cancer. She
was of Asian decent, and even though she stumbled with her broken English, and
I with my Chinese, we understood each other perfectly. Just like schoolgirls,
we saved seats for each other every day. We connected on many levels and as the
weeks moved along, we developed a deep love and respect for each other.
One day Lily confided in me that she would no longer be coming for
treatment. She opened up her shirt and I couldn’t believe my eyes. The
severity of the burns on her chest was shocking. I didn’t know if Lily’s skin
was more sensitive than mine or her level of radiation stronger. What I did
know was that Lily’s chest couldn’t tolerate any more and her treatments were
stopped permanently. I felt terrible for the hopelessness of her situation and,
selfishly, I also felt terrible for myself — I would miss her. I made several
attempts to stay in touch, but sadly Lily and I never saw each other again.
That’s not the story I want to tell
you.
Another patient I met while sitting
in the waiting room, day after day, was Peter. He had prostate cancer and
we soon became buddies. Peter’s treatments were affecting his hormone levels,
similar in ways to mine. He was going through a male menopause of sorts,
complete with hot flashes, weight gain, frequent bouts of crying, periods of
insomnia, low libido and an overall lack of well-being. He often shared
his emotional and physiological changes with me in great detail because he knew
I would understand. Peter and I developed quite a bond, playing pranks on each
other regularly. Each afternoon, while waiting for his name to be called, he ate
a banana from the fruit bowl. Peter just loved bananas. One
day, he was late for his treatment and I noticed that there was only one banana
left in the bowl. I didn’t want anyone to grab it, so being the
thoughtful prankster that I am, I snatched up that Chiquita and hid it in my
pocket. When Peter finally arrived, he ran over to the fruit bowl but
alas — no banana. His disappointment was palpable.
“What’s wrong Peter?” I asked.
“You look so sad.”
“I wanted a banana but there’s none
left,” he answered.
“Awww…that’s too bad. Well,
look down here. Oh my goodness. Is this a banana in my pocket or am I just
happy to see ya?” Quickly I whipped out that banana and Peter’s face lit
up. What a sight. To most people, this may have seemed like such a small thing,
but those kinds of exchanges amused us to no end and it helped get us through
the day.
That’s not the story I want to tell
you.
We all had our own routines when it
came to our radiation appointments. This was mine: I’d sign in, walk into one
of five closet-like changing rooms located within arms reach of the patient’s
waiting room, put on one of those terribly revealing hospital gowns and leave
my clothes on the hook, praying that no one would steal them. Of course,
I really didn’t have to worry too much about that. Being 5 feet tall, my pants
would look like knickers on anyone else. After that, I’d sit in the waiting
room, have a cappuccino, chat with a friend, read a gossip magazine to get
up-to-date with the really important issues in life, and wait for my name to be
called. When I’d hear ‘Marla Lukofsky’ over the speaker, I’d be escorted into a
cold room with a large radiation machine and would hoist myself up onto an even
colder metal table. Then I’d slide the hospital gown down to my waist, lie
there and watch the huge high-tech contraption move across the ceiling until
its projected grid pattern aligned itself with the tattoos on my chest. The
machine would then zoom in close, and the technician-of-the-day would run out
of the room as fast as he or she could, and hide behind a five-inch-thick
Plexiglas-sealed container. That got me to thinking, ‘Hey, if it’s that
dangerous for them, then what am I still doing in here?’
“Are you ready, Marla?” the voice on
the intercom would ask.
“Yes, I am.”
“Okay, then. You can keep breathing,
but DON’T MOVE.”
Talk about a contradiction. Then the
radiation machine would let out a disturbing sound that alternated between a
high-pitched squealing noise and a machine gun popping. In a minute or two it
would be all over, only to be repeated several more times on other areas of my
chest. Sounds pretty simple doesn’t it. They’d do their job by zapping me and
I’d do mine by lying still and taking in the rays.
Each day was becoming harder than
the next. I started to feel like I had nothing important to do. In order
to bring in some money and keep myself somewhat active and stimulated, I got
myself a part-time job at the only place that would hire me, Tusquellas’ Fresh
Fish Market. Can you imagine feeling nauseous and choosing to work in a FRESH
FISH MARKET? What was I thinking? Talk about upsetting aromas!!! On
the plus side, when I went into a huge hot flash, I’d just leave the customer
in the middle of their order and jump into the walk-in freezer at the back to
cool off. Sometimes I’d come out with icicles hanging off my hair. I’m
not kidding.
Every day like clockwork, while my
spirits were plummeting, I’d leave work and go to my radiation sessions. The
technicians would always ask me, “How are ya doing, Marla,” before we’d get
started and no matter what I’d answer, they’d never say much back except for
the expected platitudes. I hate platitudes. On a regular basis I would
challenge them. “Don’t be so guarded with me or any of the other patients.
We’re not going to hurt you, you know!” I guess I made an impact because
when I received my Certificate of Completion from the Comprehensive Cancer
Center, there was a hand-written inscription on it saying, ‘Don’t be so
guarded! All the best! Andrew and Judy.’
That’s not the story I want to tell
you either.
One day, while sitting on the cold
slab in the radiation chamber, Andrew, my technician-du-jour, asked me how I
was doing. Maybe he was expecting me to say the usual ‘I’m fine thanks and
you?’ but I didn’t — not that day.
“To be quite honest Andrew, I’m
awful. I work in a fish market, I smell like Tilapia, and I feel like I don’t
have a purpose in my life anymore.” Then I started to cry and cry and kept
crying as if I was making up for all the days that I hadn’t let myself cry.
Andrew handed me a Kleenex and gently said,
“Marla, I think you do have a purpose. Maybe you just can’t
see it right now.”
“What are you talking about Andrew?
All I do is come in here every day stinking of fish, get zapped, glow in the
dark and go home. Nothing more than that.”
"Well, I’ll tell you what I
see, Marla. The other day we had a new patient. Remember? She came in with her
husband, the one with the blue scarf on her head. Well, as you know, we
have to take a Polaroid picture of each new patient for our records, so that we
can make sure we’re giving the right radiation to the right person.
Anyway, you and Peter were sitting together, chatting away as per usual.
Then we came into the waiting room to take that woman’s picture, but she
refused to let us and started to cry.
‘No, you can’t take my picture. I’m
ugly. I look terrible and I feel terrible, and I don’t want anyone to see me
like this. No! You can’t take my picture.’
We explained to her that we couldn’t
start her treatments until we had the Polaroid, regulations, you know.
Her husband tried to change her mind and another technician tried too, but she
wouldn’t budge. So, we left the room to re-think our strategy while she
sat there still crying. Then I saw you, Marla. You walked over to her,
knelt down right in front of her, put your hands on her knees and
said, ‘Hi, my name’s Marla. I couldn’t help but hear what you said about
the picture, and the way you look. I really understand some of what you feel
— not all of it, because I’m not you, but I have to tell you something.
Underneath my scarf, I look just like you.’
And Marla, you took off your red
bandana and exposed your bald head to that woman, a total stranger. Then
you said, ‘You see? I look just like you. And you know what else? I think
you’re beautiful, and trust me, I know a beautiful woman when I see one and you…are beautiful. I wish I had
your looks. I let them take my picture and I’m nowhere near as beautiful as
you. Now, if you don’t let them take your picture, then you won’t be able to
start your radiation and the sooner you start it, the sooner it’ll be all over
and you’ll start feeling better again.’ Well, Marla, the woman sat there for a
minute, thought about what you said and blurted out, ‘OK… I’ll let you take my
picture.’ As soon as she said that, we scrambled back in, snapped the
shot, and got her into the radiation room. Her husband was grateful and
so were we. And now you come in here and tell me that you don’t have a purpose?
Well, all I can say is that what you did for that woman was a wonderful thing.
You helped her get through a difficult time. What’s more important than that? I
saw you take that banana for Peter and make him laugh. I saw you get that hot
chocolate for Cheryl and get her to open up to you. Even though you feel
terrible right now, you have to remind yourself that you help people…in more
ways than you realize and, in my books, that’s having a purpose — a very
important purpose.”
I was shocked by what Andrew had
told me. I was more shocked by his total recall.
“How the hell did you know about
that Andrew?” I asked. “Do you have hidden cameras everywhere?”
“Actually, yes, we do, in every
room, with intercom systems. We watch and listen to everything that goes on
around here.”
“Geez…if I knew that, I would’ve put
on some lipstick.”
After Andrew left the room, I sat
there absorbing all that he had said. He made me feel better. He gave me
a new perspective on things. You see…he took the time for me, to point out that
I took the time for someone else. It was only one moment out of our
lives, one moment in time, but it gave so much and sometimes that’s all it
takes to help each other get through to the next day and the day after that.
Sometimes, it’s just that simple.
That’s the story I want to tell you.
mmlukofsky7@aol.com
Previously published
in the International Journal of User-Driven Healthcare and Cell2Soul.
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