A f f i r m

Did I tell you I was baptized last year? On my first anniversary, I did an affirmation before my congregation that I want to share with y’all. Hello everyone. My name is Pamela. Most of you know me as “the girl with cancer”. I won’t deny it. There is about a ping pong size of a cancerous tumor residing in my brain; around the tip of my brain stem, behind my throat. It is in its stage four. Meaning it has progressed through stages 1 through 3. There is no stage five. In other words, it is an aggressive tumor. But today’s affirmation is not about the tumor. I will not give the tumor anymore narrative than I have. This story is about me, my family, and my God. This is about how I found my God, my family and myself in the midst of this journey we all call life.

In 1983, the year my paternal grandfather passed away. I was born Chao-Yun Wu, to Hsih-chien Wu, a tall college grad city slicker, and Lih-mei Huang, a dark skinned nature loving girl from the country side. My sister Theresa Chao-Wen Wu exactly twelve months before my arrival, became the first addition to the Wu family. I was delivered to my parents at MacKay Memorial Hospital in Taipei after my mom felt contractions while attending a mass on Christmas Eve. I was born on Christmas day, December 25, 1983 at 7 in the morning. By all accounts, I had a very conventional up bringing. I was a girl scout, I went through normal elementary school and after school tutors like any other big city kid in the booming 90s. I was never a good student, often being punished for being too out spoken. I played the piano; excelled at is but lost the music at boarding school. Theresa and I left Taiwan fairly naively at the tender age of 14 and 13 for Canada’s west coast. Growing up relatively sheltered, we were in unfamiliar territory. After high school, Theresa left Canada for California and I settled into the cold weather of Toronto for college. Four years after the beginning of college, I graduated and followed my big sister to the Big Apple, looking to be apart of this new and vibrant city that is New York. Which led me to my husband, Lemin. Lemin and I met one cold December wintry night at Theresa’s birthday at Otto. He had been Theresa’s then-boyfriend now-husband’s friend. We barely spoke to each other throughout dinner, even though his friends made him sit right across from me. And the rest as they say is history. We had the most scenic wedding on the island of Oahu in Hawaii. A couple months prior to the wedding I recall a conversation with Lemin in his car. I foretold him that I would become a Christian one day. I can’t say I know much about this religion. I wasn’t sure why I had brought it up with Lemin. I remember tracing my roots to him, that I recall riding in my parents’ beatup grey honda civic and dropping off my dad at church on top of a hill every sunday. And my grandmother’s diligent bible reading, the wood cross that hung near the entrance to her house so gallantly displayed, of my uncle and aunt’s devotion in their lives. Lemin responded that he will honor my decision. Fast forward to March 16, 2014. Last year tomorrow. My first birthday, March 16, 2014. The day I was reborn into this world. I am pleasantly surprised to be standing before Our Father so soon. I don’t profess to be wiser. I am not a whole lot kinder. But I am aware of the workings of God. I know this is a challenge, a task if you will. That I will learn to repent my sins. That I will learn His existence and ways. He also gave me tools to navigate through this challenge. God gave me the the best possible co-pilot in my husband Lemin, or shall I say designated pilot. Whose patience and detail-driven temperance has found care for me through our medical challenges. My husband’s job as a real estate agent meant he is able to be my full time care person when I was incapacitated. For that I am grateful.

God also gave me Affordable Care Act, or Obamacare, without which I clearly would have had a very different and difficult journey. I remember signing up in October of 2013, right when President Obama was plugging the overhaul of America’s healthcare system. By December my symptoms had progressed to not being able to walk straight. Come January, when universal healthcare kicked into affect, I received my diagnosis and was able to commence treatment seamlessly. Since I am unemployed, Lemin and I were both uninsured before Obamacare; without which it is likely we would be left in financial ruins from the medical bills. For that I am grateful. God gave me this tumor, a Glioblastoma multiforme (GBM), the most aggressive malignant primary brain tumor the symptoms of which is seizure. Yet because of the location of my tumor, not in the cerebral hemispheres, I have not had debilitating seizures. GBM is also a primary tumor. Meaning that it is unlikely to grow somewhere else. Though tumors located in the middle of the brainstem cannot be surgically removed, I believe that having received this diagnosis at my age of 30 rather than younger, as brain stem gliomas occur almost exclusively in children, I know my odds, with modern day medicine and my ability to tolerate them, fare better. For that I am grateful. God gave me my parents, whose fateful decision to send Theresa and I abroad has made everything that is who I am possible. They have made the telling of this story possible. Today, their support thousands of miles away have been unwavering in the face of immense obstacles. For that I am grateful.

God gave me my mother Teresa, in my sister Theresa, whose take charge and no none-sense personality, although in deep contrast with my husband’s, compliments each other so well she is my left leg if Lemin was my right. For that I am grateful.

God sent me angels of hope through communities at hospitals, writing workshops, art lessons, and most importantly my fellow congregation at church. I recall visiting small clinics without insurance in October and November of 2013 trying to figure out the reason for my numbing face. Sensation on the left side of my face gradually disappeared, which meant my left nostril, left ear, left forehead, left tongue etc. To this day, I still don’t feel anything on my left side. At these visits to clinics, not one doctor was able to tell me what was wrong with me. On one visit to a non-for-profit clinic in Chinatown, a Dr. Zhao told me that he thinks its either labyrinthitis or a tumor. Oh how I hoped it was labyrinthitis. But that doctor’s visit prompted me to go to Bellevue emergency for a scan of my brain. Which led me to my diagnosis. For that I am grateful. You ask me: Isn’t this all a coincidence? My answer is: No. It is not. Because I choose to live in the world where God exists. I choose his Gospel and choose to see his workings. Without it this life is colorless: without stories, without beliefs, without miracles. With this renewed interpretation of life through Christ our savior, I am learning about appreciation and gratitude. To see every aspect of my life as fuel to this journey. For instance to see social media as fuel to get better and stay better. That I may one day be healthy enough to bear a child with my husband like many of my peers have. To be buying a crib for my unborn and not a wheelchair for myself. To be holding the hand of my husband because of the love that exists between us and not because my symptoms robbed me of my ability to walk. That one day I may not see my parents cry because they worry about my illness but that they are happy I am alive. That one day my congregation may no longer see me as the girl with cancer, just a fellow church goer. Are there days I question God’s plan? Why me? Why do I have cancer at 30? What have I done? Of course I have. But in my darkest hour, I choose to live this life with God, through his light, love and benevolence, than to live a life that is filled with unanswerable questions and doubt.

So hello again. It’s me. My name is Pamela. I am living proof that this is not a story about a cure or a miracle. I will admit to having prayed to God for a cure. But I also know that it’s not about these prayers not being answered; for I have already been given the answer. That I have been able to see it all through God’s work is the answer to my prayers. My God has given me an abundance of hope and love in the absence of a cure. He has given me tools to live this renewed life. To see the world with this new outlook on life. My resolve comes from knowing that though I may not have seen Jesus Christ nor God, that I bear witness to His workings on me. I hope I have shown you my faith for I have seen.

S e c o n d

We’ve now safely entered into the second month of 2015. This is not the month of thanksgiving. But I cannot help but have such gratifying thanks to whose who have shown me in the past year what it means to be a parent, a sibling, a husband, a relative, an acquaintance, or a passerby. You’re (un)knowing participation has enriched my life to no bounds. Knowing that not 365 days ago I was commuting daily in a wheel chair in the snow to NYU langone to be treated with radiation to the brain makes being alive special. It makes every day feel worthy of a celebration. Not just of life; of our bond as human beings. Of how we were meant to have these minute connections with one another. Of how some minute connections blossom into something perhaps more meaningful. Even those that wilt away still linger deep within our hearts. Thank you for those life long connections and chance encounters. I am ready for more.

S u n d a y F u n d a y

Remy and I got into a quarrel today. After church, in the car when he picked me up, I told him in passing that I had invited the pastor’s family to dinner a month from now. He proceeded to tell me that he doesn’t really want to have dinner with a preacher and that he wants my sister to come too should the dinner take place. I got very annoyed with him because the pastor, his wife, and his college daughter have been very generous to us, with their prayers and well wishes. Even though he was not religious, the least we could do as civilized human beings was to invite them for a meal. It seemed harmless. My extension of gratitude was faced with Remy’s suspicion of a possible opportunity to convert him. Which I have no intention of doing. Having been the subject of my family members’ “plugs” over the years, I choose not to put pressure on others. Let alone religious beliefs.

When we arrived home and he parked the car, I left the bag of food given to me by a church elder and stormed off. I told him, as I slammed the car door shut, that I hope cancer is not the only thing tying us together. It’s true. Remy did not come after me. I feel him slipping away sometimes, off to his bachelor land. I don’t want us to go down that path. That path of just maintaining my illness, and not living life. I fear that almost as much as fearing death.

I had only five dollars in my pocket. Having reported my debit card lost the day before, I had no money for lunch though I was beginning to feel the hunger. I walked to Herald Square and into a couple of clothing stores. With no money in hand, shopping became mindless circling. After circling around I left the stores for the chilly fall weather outside. I headed uptown on sixth avenue and landed myself at a subway. I picked up a sandwich and headed back towards the sitting area. I hastingly ate my six inch sub and proceeded to walk towards home, a mere 5 blocks away. I had been walking outside for an hour.

When I arrived home, my husband was nowhere in sight. I put on a warmer jacket, anticipating the temperature to drop, take some bills from my not so secret stash of money, tony wheeler’s dark lands, two issues of dwell magazine, and head out the door again. I was determined to stay out tonight past dinner. I’m going to show remy I can be on my own. gloria gaynor’s I will survive will be my anthem.

I stopped by cafe grumpy first. Where I warmed myself up with a cup of coffee. Theirs is a slightly sour but aromatic blend. But their stools by the bar didn’t make sitting and reading a book comfortable. An english couple one stool over kept talking about “CHOC-let”, so I left grumpily soon. I ended up at Pret a Manger across the street. It was a miracle that this food stall was heated inside. Most food related business in new york are too cold for words. I spend the next couple of hours there traveling congo and haiti with mr. wheeler.  Then I started walking towards home again. I’ve been circling my home now for 5 hours. I ended up at a movie theater 5 blocks away from my apartment. I check to see their showings. Nothing was showing in the next thirty minutes. I give up on watching a movie alone. So I start dinner hunting and settle on what else but yet another food chain: chipotle.

During my trip to israel, Remy called. I ignored. He texted again. I looked away from my phone. The second time my phone buzzed I answered. “Can I help you?” He wants to know where I am. After telling him I will be home after dinner, he said he will come pick me up. “Where are you?” “Guess!” “Chipotle!” Why am I so predictable. I laugh.

J u d i t h

Dear Judith,

It’s been 4 months since our last correspondence. I heard today from your daughter that you have departed us. We met during a writing class. You were coming and going with your green juice. You were losing your hair but you didn’t bother to hide it and for that I thought of how brave you are. I hid my hairless head the entire summer under my summer hat. You proudly displayed it. You were on your chemo, it sounded like. You looked like you were in discomfort sometimes. I did not speak to you much. I did not speak with people at all during the class. I wanted my polished words to represent me. But you remained vocal. You gave all of us your comments on our pieces. You had a very magnetic voice and I will always remember that. I remember hearing that you were close to finishing your chemo. I didn’t know that your disease had progressed so quickly. I wrote a memoir piece and the next day after the moderator distributed it to the rest of the class I got an email from you:

Oh, Pamela,
I am completely overwhelmed with your beautiful memoir piece.  It is beautifully written.  It is powerful.  It is so deeply honest and heartfelt.  It elevates my consciousness and brings me into your world…physically, emotionally, visually, in every way.  What more can I say?  It is a truly wonderful piece of writing and a very important and moving story.  Thank you.
I send you love and blessings.  You’ve got a hard path and you are handling it with grace, by doing the best you can.  Don’t judge yourself.  You are a stunning human being and I’m glad to know you.

Judith, I was in awe and continues to be in awe of your presence. God came to retrieve another one of his angels. I look forward to the day when I can sit and share more stories with you again. I miss you dearly. Godspeed.

f r i e n d

I have some suggestions for people who have friends who are critically ill. There is no perfect way to deal with this situation if you find yourself in one. Life is not perfect. What you can do is just be there. Be here. Ask your friend how he or she is doing. Don’t worry about people’s sleeping schedules. Call. Leave a message. Your friend will get back to you when possible. Check in with him or her. Let them know you care. Show it. Don’t be shy. Life is too short to be shy. Show it and we will see.

G r a t e f u l

I am grateful for my Gunilla. Grateful for her love, kindness, her reiki abilities, her strength and guidance with me and my crazy stories about my family. This journey that I am on was placed here by the Lord. I have met so many great people, people who I would never have met but for the illness. For that I am grateful. From the hospital concierge that knows me by my name, my doorman who asks me how I am every day, to my crazy family and my soulmate Remy. I live life now with so much gratitude it spills out of me the moment I wake up. Thank you God, for all that you’ve done.

Do you?

My love,

Do you remember the first time we met? it was 7:30 on a warm December evening in 2009 and I had misread the invitation. I arrived at my sister’s birthday dinner at Otto late. But the table was not ready yet so the group crowded near the entrance. You were standing with your back to me when I made my grand entrance. My sister gently tapped your shoulder. You turned around. My sister said, “this is my sister, pam.” I held my hand out, “nice to meet you, my name is Pamela.” “Remy”, you replied. When we got to the table, your friend gestured you to sit across from me. It felt set up yet adorable. At dinner, however, we were silent. You wore a white dress shirt with a dark sweater over it. You looked like you were going to an interview. You had your hair, which was longer back then, slicked back with enough hair products to spread across a bagel. You had kind eyes, you still have them. When I spoke to you you tilted your head and I felt heard.

Do you remember our first date? You picked me up in that hideous white turtleneck after work one evening a week after Otto, New Years Eve. We went to a Japanese restaurant in Brooklyn. I remember you talking about your family. Your mom and your sister. Your father took his life when you were in elementary school. You said you grew up in Yokohama. You don’t speak Chinese, even though your family is fourth generation Chinese-Japanese. How your mom uprooted you and Airen from Japan to Hawaii when she met and married her Spanish-American second husband. How you resented her. And the house party in Times Square we went to after the dinner? I had lost control over my liquor intake and became incoherent. When it was near twelve and we all proceeded down the stairs to watch the ball drop because the elevators were overcrowded, I found myself holding your hand. I don’t recall if it was the alcohol that made the stairs impossible or it was an instinct. When we were outside, I remember the herds of people, separated block-by-block by police barricades. I remember you still had my hand in yours when everyone shouted “five, four, three, two…retch”. Instead of happy new year, I puked on your shoes.

Do you remember our vacations? Like our first trip to Hawaii, where you’d lay your right hand on my lap when you drove, as if it had always been there. Or Japan, where you took me to your childhood neighborhood, where I felt like I was learning about your pathway to me all over again. Or Hong Kong, where you proposed by the Kowloon promenade, how we sat on the bench talking about our future after I said yes. Or Taiwan, where it was my turn to show you my roots, my past and our future.

Do you remember the day I became a Chang? It was on a May day at City Hall and my sister, your mom and sister bore witness. I had on my pale yellow cheongsam with a bouquet of yellow flowers we bought from WholeFoods. After I left my maiden name behind, we walked over to a dim sum place in Chinatown to celebrate the nuptials. We congratulated each other over tea.

Do you remember the wedding? We had it not too long ago, last year, on the island of Oahu. A small wedding, but 80 guests. My dress, a size 10 which I had gotten at a Reem Acra sample sale; your JCrew tux. Our Bee gees wedding song ‘How Deep Is Your Love’; our friends’ dancing to the live band. Your mom’s making a big deal about the seating chart; my mom’s emotional absence from the ceremony. My red ankle length cheongsam; the dragon dance your mom demanded. My tears when my dad put my hands on top of your; our vows ‘in sickness and in health’ to each other. Did you think you would need them so quick?

Do you remember the hospital? You dropped me off at Bellevue that monday afternoon after we failed to get an MRI at the Imaging Center due to insurance issues. It was a day before my diagnosis. I stepped out of the car and something in my head was spinning. Unable to walk straight, I moped down the ramp with my hand on the handrail into the main hall. My brain couldn’t register where the emergency room was. You were parking the car and I needed you. I lost my sense of direction. I needed your hand in mine to tell me where to go. I was lost. I am lost without you.

Do you remember how much love I have for you? I try to remind you in the midst of this whirlwind journey we are on. I know you were not dealt with a favorable hand. And sometimes it’s hard for me to show, especially when my nasty side leaks and I blame it on my illness. But I do. Even when we spend most nights now sitting two feet from one another, each at our own computer, ESPN in the background, not speaking, barely interacting, I still sometimes whisper to myself, “Remy, I love you.”

 

A n n i v e r s a r y

Last year today, I married the love of my life. Happy Anniversary Remy. I’m sorry I’ve been such a sulk this week from chemo. I promise I will be better next week.

Introduction (?)

Hello everyone. My name is Pamela. I am a thirty year old female who is living with cancer. I am originally from this gorgeous country called Taiwan. I one of two siblings, my sister Theresa also lives in the city with her insanely funny husband Nikko. I was diagnosed in January after a doctor I visited at the Charles B Wong Center told me that my symptoms could either be Labyrinthitis. Oh how I wish that was what I have. I’ve been experiencing so called ‘symptoms’ since last September. It was a month after my wedding, I woke up with a number just behind my hairline. It slowing and gradually travelled to me chin by December. The numbness included left tongue, lips, nostrils. When I wasn’t able to get an MRI because of an insurance issue, I went to the ER. At that time I wasn’t able to walk straight, I had vertigo. So after a quick CT scan, two nice lady doctors stopped by my stretcher and put they warm hands on my knee and thigh and told me I have a mass in my head and asked me if there’s anything I need. Sitting beside my stretcher was this adorable 94 year old lady who was in the hospital with what they were telling her pneumonia. Oh how I wish I was in her shoes. I was transferred to a hospital room around 12. I have to admit I had no idea what this mass means. When the lady doctors came did I think it was cancer? No. I just heard a mass. Even the 4 days I spent in the hospital after an MRI and all the neurological test I don’t think I knew what I was up against. Maybe it was denial. Maybe it was lack of information. They discharged me after 3 nights and gave me an appointment with a neurologist for the following week. Then came the sunday. I was really not feeling well and my family told me I should go back to the ER. I think my sister saved my life. Two days into my second hospital stay, after another MRI and another CT scan, a stereotactic biopsy and a shunt on my right side, I have glioblastoma multiform stage 4. I have some really terrible days and I have some really good days that I wish can last forever. I have all the treatment for now behind and after that I am going to look at other options out there, immunotherapy anything. I am going to try everything. Thirty is too early. I have so many things I want to do. I want to have three kids; one boy one girl and a boy, just like my dad’s family. My parents flew in to the City to be with my and they try to come see me everything and I am so grateful. I am so grateful for my husband who puts up with me when I have my pain spats and when I need help with everything. I am so grateful for my older sister who gives me positive energy when I’m down and takes me to classes so I can forget about the pain I am dealing with during treatment. I am grateful for my mother in law who brings food and gave me the her son as the best husband I can ever ask form. I am thankful for Obama because without affordable care act I would not have insurance and I would not be here today with all the treatment I need. I am here because of all these God given things.

l o v e

i’m not much of a ooey-gooey love person. i mean who would admit. but love is what I see everyday now. through my husband. who has really gone above and beyond his call of duty. i joked with him last week with that i bet he can’t believe that in sickness and in health came this quick huh. he chuckled. that’s love. i love him beyond life itself. this is for you Remy. and it’s not because tomorrow’s valentine’s day. it’s because it’s a thursday.