It is almost eight years since mom passed
away and exactly five years since I attempted to write about my parent’s
journey with cancer. I never got to finish the story! I guess I wasn’t ready to
recall all the details.
The last sentence I wrote was about my mom looking
amazingly good after a major surgery in Jerusalem. She did look so peaceful.
Doctors made sure to keep her sedated. They had opened up her whole body to try
to locate the origin of her cancer! The surgery was almost the last resort
before she could undergo a Petscan, which was supposed to detect invisible cancer
cells.
To be honest at that point we didn’t know
what to wish for (find the beast or not). Deep inside we didn’t want to admit
that mom was a cancer patient. Finding the cancer would confirm her as such.
But scientifically my brother and I learned that if cancer wasn’t found, it
would be confirmed as “CUP – Carcinoma of Unknown Primary” a very rare kind of
cancer with a very poor prognosis (6 months or less). When the Petscan came out
negative, subconsciously we knew mom might not live long enough to celebrate
her birthday.
It is amazing how such experiences teach us
to live one day at a time, if not one minute at a time. To us, mom was still
alive and we needed to have all the positive energy to get through the most
difficult days at the hospital. I decided to spend the whole five days and
nights with her after the surgery. I remember my mom and I reading and
memorizing verses from the Koran to help sooth her pain and ask God for a miracle!
Five days later we went back to the hotel
to enjoy a one-week break before the last test. I didn’t want the week to be
over! The next day, my mom had enough energy to go out. We decided to have
lunch just the two of us in a hotel nearby. It was one of the most special
moments with my mother. I even remember what we had for lunch. We had decided to eat
healthy from then on. We had smoked salmon sandwiches on brown toast and salad.
After lunch we walked to a bookstore nearby. It was simply called ‘The Bookshop’
and was known to be one of the most popular in Jerusalem. The owner was an avid
reader and knew all his books. He helped me pick five books. My mom picked up a
book she liked but didn’t want me to buy it for her. When the owner saw I was
insisting, he decided to give it to us as a gift! The book was called “A Stone
in my Hand,” the last book she’s ever read.
It’s funny how certain things that had no particular meaning in our
lives, suddenly become valuable when their owner passes away! You cling to every
scent, every fingerprint. Although they’re invisible, but it is enough to know
that their fingers touched those pages, their eyes read every word.
I can’t remember how we spent the rest of
the week. I remember my brother going back to Amman and two of my friends
coming to visit. A friend took us to a
seafood restaurant in Jafa. Though we had a great time, enjoyed the scenery and
the food, it was heartbreaking to see the city lose its character and become a
typical Israeli town.
The week passed by very quickly. One more
test and one more result before we could go back to Amman. We were told that
the Petscan might reveal lesions on the lungs because it was the only organ that
wasn’t examined in Jerusalem.
We were called to the doctor’s office for a
last appointment to get the final result and plan for the following months. The
result was again negative and though subconsciously I knew it wasn’t a good
thing, I wanted to make believe that God answered our prayers and made the
cancer go away.
I will forever be grateful to that doctor
for choosing to lie to us that day. He said to my mom “I’m optimistic and I
think you deserve a long break. Go back home, enjoy the summer and come back in
July. All I need from you is a blood test every month and as soon as I come
back from my vacation, we will talk about our next steps.”
His words were so comforting! I felt we
still had hope and my mom could actually overcome this.
But the reality of the situation was
totally different. Any other doctor would’ve said, “There is nothing much we
can do at this stage. Your case is advanced and we think you should go back
home and spend the last few months of your life at home with your family.” But our
doctor chose not to say that!
It felt so good to be home among friends
and close family. My brother, Khalil had been working on a new landscape for
our garden as a surprise for my parents. It was his way of handling pain. They
of course loved it. The garden was their haven. They’d spend hours taking care
of it, watering the plants and admiring the flowers. They’d have their morning
coffee and afternoon tea in the garden. If the weather was nice, we’d have our
dinner outside. My mom had planted a bougainvillea when we first moved into our
house back in 1979. It grew so beautifully that it now covers the façade of our
house. Every time I look at that tree, I remember my mom talking to it. She’d
say “don’t you dare die on me.” She would read out verses from the Koran to
push the evil eye away!
Our priority during that month was to keep
mom comfortable and happy. My father had already started taking his monthly
oral chemotherapy treatment, which was manageable. My mom asked me to buy her
comfortable clothes to wear when receiving guests. I got her a lovely
traditional turquoise dress. She looked so beautiful in it. The reflection of
the blue on her green eyes and face made her look so angelic and graceful.
I remember managing my mother’s illness like a machine. Diagnosis was our first mission. It was over the day we came
back to Amman. Deep inside we knew it was bad news but we didn’t want to admit
it. We were all in denial. I think part of the reason was because mom still
looked healthy and the other part was because we believed she was immortal. My
mind was playing tricks on me. I used to think to myself “no it can’t be
over…she’s still too young, she hasn’t seen any of us get married, she said
she’d be the one to raise our kids, she still has a lot to do in life…God won’t
take her away from us…at least not yet.” Believe it or not these thoughts made
me survive the remaining time we had with her. Deep inside I believed it wasn’t
over. I picked up all the negative thoughts, put them in a bubble and let it fly
away.
I went back to work and started mission
two…treatment …my way”!
Looking back, I was functioning on autopilot. I
gathered all the information I could get on alternative treatments: Macrobiotics,
Raiki, massage, supplements, and applied everything on her. Poor mom,
she accepted it with no hesitation.
I remember we had a month break before our
next appointment with the doctor in Jerusalem.
Mom met a Raiki healer and started taking lessons (years later I
found out that it was a mistake to teach a cancer patient how to heal!) I found
a good masseuse who said he had experience healing cancer patients.
Between
sessions, I would prepare her macrobiotic meals and supplements. The most
interesting remedy of all was the grated ginger and potatoes stuffed in a
pocketed belt which my grandmother sewed so neatly. I would prepare the mixture
every morning before I go to work and wrap it around the area of the tumor. It
was said that ginger absorbs the tumor and eventually makes it shrink. How
silly was that? But desperation can cause us to do anything.
I would like to believe though, that it was God’s way
to keep us busy and help us handle the most difficult reality in our lives,
which is watching our beautiful mom wither and disappear.
June went by so quickly. During that month
I had a business trip and couldn't wait to come back home. I would call my mom from
the office more than twice a day and with each phone call I’d have a sinking
feeling of fear that soon I’d call home and she won’t be there. But again, I’d
put the thought in a bubble and blow it away.
Throughout that whole ordeal my brother
Ghaith was working in Doha. My mom decided that we shouldn’t tell him about her
being sick! He only knew about my father and was calling every day to check on
him. My mom would talk to him and pretend everything was ok! When I moved to
Dubai four years after mom passed away I’d think about Ghaith and feel guilty
we denied him the right to spend more quality time with her. He only found out
when he came back to Amman for his summer vacation. I don’t want to imagine the
shock he had when he saw mom. He came back around his birthday July 17th
and I bet it was a birthday he’d never ever forget.
A few days before Ghaith came back we did
the blood test the doctor asked us to do and were devastated to learn that her
tumor markers went up from 400 to over a 1000! We called the doctor panicking.
He asked us to wait one more week and do the test again in a different
lab. On the sheet the result read 500,
so we took a sigh of relief! Again it was the divine intervention that made us
go to a lab that doesn’t spell out the precise number, but includes an arrow if
the result was over 500! ! I guess it was God’s way to help us
preserve some energy for what was yet to happen.
During the same week, my mom’s skin became
a dark orange…we thought it was caused by the beta-carotene supplement we’d
given her. We took her to an oncologist
who later referred us to a liver specialist. She was apparently jaundiced
because the tumor started to cause obstruction in the bile ducts.
He immediately admitted her to hospital for
a procedure to place a stent that helped remove the blockage.
She was released to go back home the same
day. But that same night my father woke us up to take mom to the ER. She
had the most unbearable pain, which was an expected side effect of the
procedure. She was sedated and ended up staying in the hospital for 17 days.
At that point we knew she would no longer be physically able to go back to
Jerusalem.
It took a whole session to convince her new
oncologist in Amman to get in touch with her Israeli doctor. Listening to their
conversation was a minute that will forever be engraved in my memory. I could
only hear the Jordanian doctor saying, “Can you give me the reason why you
didn’t tell them the truth?” “With liver metastases the patient is not a candidate
for chemotherapy treatment or any treatment.” Apparently the answer her Israeli
doctor gave was that he was being considerate of the fact that we had two
cancer patients at home. He wanted us to
enjoy a break as a family. I will forever be grateful to that doctor!
At least my mom left his clinic with a smile. I remember her telling him “you
remind me of my brother Ihsan…you look like him”! I could feel a connection
between her and that doctor regardless of his nationality or political
orientation.
Going back to that hospital room, my mother
started to weaken day after day. She was sedated most of the time. I remember
asking her to rate the pain from 1-10. She’d say 20 with a smile on her pretty
white face. It was the only way I could measure the pain she was suffering
because she feels too embarrassed to complain.
I remember her telling me a long time ago when
she was in labor the first time, the nurses left her in the room without any
company. They thought she needed a long time before she could deliver. But in
reality she was in severe pain but was too shy to make any noise!
The most difficult part of this whole
experience was the day I had to leave her in the hospital and take my father
for his monthly check up in Jerusalem. Though the doctors assured us she was
getting better and would go back home the same day, I wasn’t comfortable
crossing the bridge. What if something happens and they decide to close the
bridge for days as they always do? It was a huge risk but we had to go. My
grandmother met us in Jerusalem, and as we were having fruits in the room that
night, my brother called to tell us that the doctors decided to keep mom in the
hospital because her temperature went up again. I remember crying like a baby.
I suddenly felt imprisoned. There was no way anyone could cross the bridge
after 8:00 p.m. So we were forced to wait till the next morning to go back to
Amman.
She was kept in the hospital until her
temperature went down. Though the doctor had decided that her case was
untreatable, he respected our wish to give her chemotherapy treatment to
protect her from the painful reality. I didn’t have it in me to tell her there
was no hope!
But despite the painful truth, I still had hope. All of us did. It is amazing
how the brain works. We were fully aware of the fact that mom only had a few
months to live, but our brain somehow managed to block the reality and function
as if everything will be ok.
We had a week break before the first
chemotherapy treatment. It is amazing how these experiences give us a totally
different perspective on things… like time. Everything in life gains value.
Time becomes very precious. Every minute counts, every day is lived to the
fullest. Good health becomes one’s only priority and everything else becomes
insignificant. Material things don’t matter anymore. You no longer care what car you drive, or who you are in society. Suddenly life
takes a different turn.
After the long stay in the hospital,
something whispered in my ears urging me to stop torturing my mom with all the
alternative remedies I was giving her. I obeyed the minute mom asked me to get
her “7urra2 Usba3o” which is a cold traditional Syrian dish made of lentils,
dough and crispy bread! I ran to the closest restaurant and got it for her. She
ate it with a full appetite.
The second bonding experience I had with my
mother was on August 2nd, the day of her first chemotherapy
treatment. She stayed in the hospital for one night and ironically she looked
so peaceful. I remember her telling me she didn’t feel like she had any
treatment. She didn’t experience any fatigue or nausea.
Her next treatment was scheduled on August 19.
Again we had a three-week break, during which she started to look weaker and
weaker.
One day I was taking her to the bathroom to wash her hands after lunch. She
looked at her face in the mirror and said “I look like your grandmother when
she was really sick…look at my face!” She was heartbroken and I felt like
someone had stabbed me in the stomach. I didn’t know what to say to her except
“don’t say that, you don’t look that bad, you only look a little tired.”
With time her tolerance to anything and
anybody became lower. She had no energy to see people and hated to be seen by
anybody except people who were very close to her.
She wouldn’t even accept any hugs or kisses from anyone. I used to steel hugs
when I helped her get dressed. Her head would automatically fall on my shoulder
and I’d hold it for seconds pretending that she voluntarily put it there.
At times she’d feel ok and would watch TV
with us. On August 18, we were all
gathered around television cheering for a Jordanian singer who was among the
finalists on a show called Super Star. My
mom couldn’t watch it till the end but asked us to wake her up when they
announce the results. The minute Jordan
was announced a winner we ran upstairs to tell her the good news. She was
already awake and said, “I could tell from all honking outside”.
Early next morning at around 5:00 a.m. my
dad came rushing to wake us up. Mom was screaming of pain. The pain was very
bad that she was unable to stand up. We rushed her to the hospital. She was
immediately given a high dose of painkillers. She was sedated all day and all night.
We all stayed by her side. It was the day she was scheduled for her second
chemotherapy session but at that point she was too weak.
Another incident that will forever be
engraved in my memory, was when her doctor called asking me to decide whether
we would put mom on life support should that be necessary any time
soon. I knew I had little time to consult my father and siblings. So I asked
the doctor what he would do had it been his own mother. He said he wouldn’t
want to torture her. And that was the decision I took on everyone’s behalf.
The next day my mother asked for the nurse
who took good care of her during her long stay at the hospital. He was in Aqaba
but I was touched to learn that he made a u-turn and came back to Amman to be
with my mom.
While we were waiting for him to come, her
doctor came to visit my mother and she asked him to explain the reason behind
this unbearable pain. All he asked her
to do was to say “Hamdillah” she listened to him and kept saying it. That
afternoon her lips turned blue. We later found out that she was having a
stroke. The doctor sent her to ICU where she spent the day. He later called to
tell us that she had less than 24 hours to live! I couldn’t believe my ears.
“Not so soon” I thought. Not like that!
She was sent back to her room to spend her
last night with us. I say this eight years later. But I don’t think I realized
then that it was in fact her last night.
Suddenly the waiting room was full of family members and close friends who all
came to say their final goodbyes. The next morning, August 21, we woke up at 6a.m.
She wasn’t conscious but was still
breathing with the help of an oxygen mask. The five of us and my father were
gathered around her bed. Her nurse was there and my grandmother was sitting on
a chair reading Koran. My mom used to love it when my grandmother read Koran
for her. It used to make her feel good.
At one point my aunt came inside the room and felt mom’s feet. They were getting cold and she asked all of us to leave
her alone. According to her it was better for her soul to go peacefully. My
eldest brother refused to leave her and I wished I could stay with him but I
felt I had to do what was best for mom. Not sure that was the right thing to
do! I could’ve spent a few more minutes with her.
I remember one nurse forcing a pill into my
mouth to relax. I think she did the same with everybody else. The next minute I
could see nurses rushing inside the room talking about time of death! 10:55
a.m.
I can’t remember anybody’s face but I remember throwing myself on a sofa
screaming…not sure I was crying but I know I was screaming. My father came up
to me, held me so tight and said this was God’s will and we must accept
it. I didn’t know what to do. I was
pulled in different directions. Some people wanted to hold me and others
offered help with funeral arrangements!
How can this be? A few minutes earlier she
was breathing, and now we’re talking about funeral arrangements? I was later pulled to another direction that
will also be engraved in my memory for as long as I live…mom’s “ghaseel.”
My brother Ghaith came up to me and said, “If you don’t come inside to see how
beautiful mom is looking, you will regret it.” I listened to him and went
inside to see her so relaxed with a smile drawn on her pretty face. For the
first time in four months, she looked so alive. I was in a different world. For
seconds I was in my mom’s world feeling at peace, so relieved, so happy. I had
this feeling of unexplainable serenity. A voice inside was telling me to let go and
be happy for her.
From that moment the dark shadow around mom’s passing was transformed into a
bright white color. I’m not saying this to romanticize the moment, but I actually
felt so peaceful, very sad to lose her but happy deep inside for reasons that
are known only to her. I would like to believe that I was blessed to get a
taste of the heavenly experience she had the minute she was set free.
I won’t say I didn’t cry. I did cry…my
tears were falling very quietly. Friends were worried that I’d collapse any
minute but I didn’t. I was composed throughout the condolence days. From then
on bonding with my mother took a different shape, a different dimension.
She didn’t wait too long to assure me she
was doing fine. The day she passed away I decided to sleep in my sister’s
bedroom. I felt the need to stay close to my family. I was lying on the floor with my eyes open, thinking. Suddenly I could feel a ball of energy coming
closer and closer. It was the most amazing but yet the strangest experience
I’ve ever had in my whole life. I lost
sense of speech, and felt as if I had to hold my breath to prevent the ball
from escaping. Time froze and with it everything else froze to welcome mom’s
pure soul into her new world. Or maybe it was mom’s soul welcoming me into her new world. Whatever the case,
it was a blessing from God, for which I felt I should be grateful.
I don’t know how many people came to pay
condolences. We had a full house for three consecutive days. I wished my mom
were watching. Deep inside I started a conversation with her and believed she was listening
and responding. We cried, we laughed and we prayed.
One afternoon, a voice whispered in my ear reminding me of prayer time. I went
upstairs to my room and started praying. The moment I put my forehead on the
floor, I felt this deep warm energy on the base of my spine! It was mom again
saying she was there. By now I could recognize the feeling of her energy. I
felt like I was an infant learning the five senses for the first time.
I was blessed to be one of the few people who get to be introduced to a new
heavenly sense, a sense of our loved one’s energy, their soul.
When the three days were over, we got to
spend some time together as a family. We would gather around my father in the
living room to talk about mom. One day as we were gathered around him, my mom
decided to share the moment. I felt the same ball of energy step into the living room and find a comfortable
place for itself right beside me. Again, I lost my speech and felt that time
froze. I wished I could share the moment with my family and tell that mom was
here. But I was sure they wouldn’t take me seriously. So I decided to keep that
wonderful experience to myself and hope I would relive it over and over again.
