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.

i n s t a l i f e ( p a r t u n o )

I’m going through my Instagram account. 2014 has been a wild year.

For those who care to follow my journey i’m at @pealower. And this is 2014 picture by picture, word for word.

1st is a photo of my sushi dinner at sushi yasuda with the family. My first raw fish of the year. It is one of the few times I would eat with my mother in law, my parents, my sister and Remy. We ate and laughed like we were one big happy family. Who knew that less than one year ago my mother in law sat turned away from my first dance with my father at my wedding.

2nd is a photo of my wedding day. Me with my Remy. It was a magical night. With the exception of the drama with my mother in law, it was magical. I remember the canoes that bobbed around on the ocean, the paddle boarder that casually came into our view, the sun that was so warm and bright, pastor richard’s hawaiian chant, his speech about ohana, and the ‘somewhere over the rainbow song’ on the ukulele.

3rd is a photo from create arts center. My sister invited me and Remy for a night of booze and painting. We don’t drink; but we painted.

4th is a photo from the lunch right after my baptism. I was as happy as happy can be. I don’t remember what I was clapping at. I looked like I was having the time of my life.

5th is a photo of my side table. It has flowers and plants from our loved ones. The germini daisy from my mother in law, tulips from larenta, and the mini carnations from my church friend Vivian. The backdrop is a signature board from our wedding. Covered in all the good wishes from family and friends.

6th is a photo from our outing at Brooklyn Botanic Garden where we saw cherry blossoms at its peak. It was march and I had just begun to venture outside my front door. I remember the discomfort I had walking up the small steps at the garden. I can now climb a full floor of stairs no problem. It’s amazing what 300 days can do to you.

7th is a photo of my ‘justin beiber’, the mexican fortune tree I got from my best friend. Her husband hauled it to dinner at aburiya kinnosuke. I approve of their relationship.

8th is another photo of the cherry blossoms. They were all in bloom; bright pink and full. I remember Remy exclaiming that he is not used to seeing cherry blossoms so pink. He said that in Japan, most of the blossoms were white or light pink. Who knew the US would be more hot pink than Japan, the land of hello kitty.

9th is a photo of my salad lunch from a joint in chelsea market. It was the first time I’ve seen my other best friend zoe in years. We had a falling out in 2008 but we’ve since reconnected.

10th is a photo of my soba dinner at sobaya in st. mark’s in NYC. I remember sitting at the bar with remy, the restaurant crowded with chinese tourists.

11th is a photo from figment on governors island. The exhibitions were pretty sad but it was a gorgeous day with my friend larenta. I remember the boat ride to governors island, where I spoke to her in detail about my health. We ended the day with Remy and I dropped her off in chelsea, where we went to grocery shop (our favorite past time) and larenta went back to home on the upper east side via foot, her favorite way to travel in the city.

12th is a photo of a necklace laced over a pineapple. I had started beeding and it was one of my first creations. The photo is a photo I later uploaded onto etsy, in a failed attempt to sell it.

13th is a photo of my feet on a green yoga mat. I started going to a light yoga class at Gilda. I was immensely proud of myself for having started yoga then. A couple of months ago I couldn’t have fathomed doing downward facing dog.

14th is a photo of myself at the crew store on fifth avenue in 2013. Pre-cancer. I had beautiful long hair. I was losing my hair in heaps. I never knew how much hair meant to me until that point.

15th is a photo of the roof at the venue for the broadway show cabaret with michelle williams. I don’t know how emma stone is but michelle was to die for.

16th is a photo of neymar on tv. It was the beginning of fifa world cup. Remy would be glued to the TV for 2 weeks.

17th is a photo of the tray for the check at hakata ton ton, one of Remy and my favorite restaurants in the city.

18th is a photo of the mosaic art I made at my art class at creative center.

19th is a photo of the lunch Remy and I had at legal seafoods in New Jersey. The food was decent; some of the mussels were rotten. I wouldn’t recommend it.

20th is a photo of the grand budapest hotel dvd Remy got me. It is, in my opinion, the best movie of 2014.

21st is a photo of my wrist. On it are six necklaces; all made by yours truly.

22nd is a photo of me, with my arms wide open, embracing the first day of summer, at buttermilk falls, just north of the city.

23rd is a photo of the google search engine, which paid homage to the japan v colombia, which would be the end of their fifa run for 2014.

24th is a photo of the rainbow of bracelets I made.

25th is a photo of this yorkie I saw at ABC carpet and home. He or she, stooped up on a bar stool, kept licking its nose. I think he or she might have been sensitive to the scent at that counter.

26th is a photo of all my beads, neatly organized in individual plastic containers. I had so much fun organizing; perhaps more fun than the beading itself.

27th is a photo of my ‘justin beiber’ plan blossoming, his leaves green as can be. He looks regal.

28th is a photo of my diy american flags in anticipation of Remy’s mom’s fourth of july party. Again, I had more fun with the preparation than I did at the party.

29th is a photo of some cookies I had decorated with the home made flags.

30th is a photo of the sky I took at my sister’s apartment. We had gotten into an argument just moments earlier and I was wishing I was somewhere else.

31st is a photo of some maryland blue crab drenched in spices from our road trip down to duke to see an oncologist. I would later develop some disturbing rash on my face from the crabbies.

32nd is a photo the entrance at chinatown in dc. It was on the same road trip down to duke to see the oncologist.

33rd is a photo of the menu at pho 75, a vietnamese place we saw on anthony bourdain in philadelphia. It is one of the worst phos I’ve ever had in my life. Just goes to show, can’t trust anything you see on tv.

34th is a photo of the fish filet in chili oil from han dynasty in NYC. It is a philly import. It is some good fish. We waited for close to 45 minutes for a table. I spoke to the hostess in mandarin, something I think everyone who speaks a second language should do when communicating with your fellow comrade.

35th is a photo of the red roses Remy surprised me with. Remy rarely buys me flower. I rarely hint to him that I want flowers. I did tell him that any woman who tells her significant other that she doesn’t like flowers is a liar. Who doesn’t want to feel loved? What better way than with flowers?

36th is a photo from cancer care’s office on the 16th floor of a high rise on 6th avenue. It is a photo of downtown manhattan. There are an overcast that day which made the picture even more magnificent.

37th is a photo from our flight to durham, NC. It would be my first trip of the year. It was an uneventful flight, just shy of 2 hours. The uneventfulness made it eventful. Now we know I can fly. Let the summer trips begin!

38th is a photo at my favorite sushi joint in NYC, the infamous sushi yasuda. It is so delicious; a must try if you’re in town.

39th is a photo of me with my arm up in a soldier’s salute at warbyparker. The brooklyn-born store has this photo booth, with three backdrop changes, for customers to play with free of charge. Let’s make it another must try when you’re in town.

40th is a photo of the audience at cirque du soleil’s performance of varekai at the barclay’s center. It is the first time i’ve been to the new stadium.

41st is a photo of a sushi dinner from sushi yasaka, a new restaurant discovery. The restaurant itself is not new; it is just a new restaurant to Remy and I. We don’t normally venture out west of 6th avenue. We drive almost everywhere we go but we seldom see the need to trek that far. My Gunilla took us to sushi yasaka one time and we were hooked to the quality and the price; again, a must try if you’re in town.

42nd is a photo of a maltese we saw at beacon’s closet. Remy and I brought some clothes to beacon’s closet for sale. Unfortunately the store didn’t find anything I brought interesting, not even my marc jacobs shoes. They were not in season, the clerk said, they were looking for winter shoes not sandals.

43rd is a photo of the sky. I was in the car on our drive back from brooklyn. You could see the sun peaking through one of the clouds. I spend allot of time, thoughts wandering, when Remy is driving. He is almost always caught up with what’s going on with the road, rightfully so. I stare blankly out the window.

44th is a photo of Zooey, Gunilla’s temporary roommate. She was cat sitting for her friend. Zooey didn’t jump on Gunilla’s guests. She would stare at Remy and me and responded only to Gunilla in a respectful way. Almost giving us space. She is the most well behaved cat I’ve ever encountered.

45th is a photo of the moon from our street. It was the night of the super moon. Remy and I walked out, after dinner, to get a glimpse of what newscasters said was a must see of 2014. So we did.

46th is a photo of the ordering sheet from Neptune Oyster in Boston. It would be the beginning of many many trips we’d take to boston for my clinical trial. The temodar I had been taking for close to 7 months had stopped working. I was developing new symptoms and my pregnant oncologist had removed me from the drug. She advised me to look for other options. So I ended up at Dana-Farber.

47th is a photo of the lunch plate at roddee in Boston. It is a thai place in brookline; a mom-and-pop shop Remy frequented while he was in college. He’s never ordered anything else. It’s always been spicy chicken and basil. And so this photo is.

48th is a photo of me, Remy and my dad. We were at the lookout just before diamond head on the way to kailua. It was a couple days after our wedding, which took place in Honolulu. We were on our way to drop my parents off to the airport so they can go back to Taiwan. We didn’t have enough time to sight see with them so our brief drive was meant to be for their quick tour of the island.

49th is a photo of the wallpaper at Ivan’s Ramen shop on the lower east side. Now this is not a joint that I would list as a must go. It is not bad food. It’s just not the type of ramen that Remy and I prefer. They do have nice decor.

50th is a photo of a picture at colonnade hotel in Boston. It is our second or third stay in Boston for my treatment. The hampton inn that offers medical rate ran out of rooms. Remy decided last minute for us to stay at the colonnade. I had just confronted the concierge over the absurd wait they put us through, after having been told we booked the rooms late.

L i f e a n d D e a t h

“Will you miss me when I’m gone?” I asked Remy on our way back from Dana-Farber in Boston to New York. In the darkness in the car I saw his eyes go from tiredness to sadness. “Gone where?” he asked, ignoring the obvious. “Don’t be in denial. When I’m gone for good.” I feel my noise sour. My cheeks clinch. My jaw tighten. My vision blurry from the waterworks about to come. I tried and failed to hold my tears. The thought of being forgotten is the scariest thing to me now. I admit that I used to romanticize about death. Before I got sick, I told Remy I wanted to be cremated and my ashes spread in the ocean. I’m not sure why I wanted to be in the ocean. One of only two times I snorkeled in Hawaii I found myself bleeding from my calf. I had slammed my leg against the coral reef after trying to swim away. I had freaked out underwater after finding myself in fish territory. I don’t understand why it’s fun to swim in fish habitat. I felt like a human in an aquarium. Fish out of water. So it surprised even myself when I wanted my ashes to be one with the ocean. I don’t think like that anymore. Now that death is closer than ever, I don’t want the same things anymore. I still want to be cremated. But I want to be in a Batsudan, in my own home. Don’t get me wrong: I am a Christian. But I want to be close to my family on earth too. I hope Our Heavenly Father can accept my compromise. I don’t want to be buried six feet under somewhere in the mountains. I don’t think I care for being on a hill with a beautiful view. I want to be remembered. I want to be close to my loved ones so they can remember me.

Did you read about Brittany Maynar? How brave is she? To be able to say how and when? I wish I have an ounce of her courage.

“What are you thinking?” Remy asked. Still paralyzed with fear from being forgotten. “Nothing”. I taste the salt in my tears which are now pouring drops into my mouth. I look away into my window, Remy’s face reflected in my window. He put his hand on my lap like he always does, “You’re not going anywhere”.

W o r l d

The world is passing me by. Literally. When my husband drives me around, which he does everyday, I can no longer focus my eyes on the streets as we zoom by. I see everything at a glimpse as they pass me by. Unable to focus my gaze. Especially on my left side. I feel like I am losing in this battle. But I don’t want to be remembered as a loser. I am a strong person; stronger than I ever imagined myself to be. I want to be remembered as someone having put up a good fight. I don’t even like the analogy of a cancer fight. Its underlying meaning is a win vs a lose. There is no loser in this battle. This is life. Just because we pass on due to cancer, like some in an accident, others in other ailments, does not mean we lost. This is almost a battle that cannot be won. We all leave this earth eventually. It is not ours to have for eternity. I will cherish the time I spend here. May you also do so at your leisure.

D w o r d

Today I was told my tumor has started growing again. I have more blood vessels in my tumor than the last imagining. My parents are here with me again. So is my Remy. This is life. I have been gifted with so much. I am not ready for it. But it will come one day. Some day. Starting now.

t w i n s

I have an older sister and a mom who are twins.

They both enjoy giving advices. When my weight dropped dramatically during treatment, my nutritionist suggested high fat content foods to eat that required little chewing; i.e. peanut butter. My family was concerned over the weight loss but more concerned over being heard. One night before dinner, when the twins were over at my apartment, I asked for a spoonful of peanut butter, to which my husband handed to me. All hell broke lose; “you need to eat fresh, not processed”, “peanut butter is too fat”, “too much mold in peanuts; it’s not good for you”. I broke down in tears when they threatened to leave the apartment because of my disobedience. “You need to listen to other people’s words”.

They both enjoy cooking. When they came over to the apartment, almost identically, they’d b-line for the refrigerator. The small white refrigerator that freezes anything that is too close to its back wall. They’d start going through it like dumpster divers, improvising a dish in their heads. Some time later, a mysterious dish would appear on the dining table and a command of “sit, eat” delivered regardless of the time of day.

They both are punctual. Every thursday at 2:30 is sisters thursdays, says my google calendar. My sister invited me via an email to set up this appointment. We have so far met up twice in 2 months. I see her less often than my art therapist. My sister’s other twin, my mom Linda, comes and goes as she pleases. Ask to see her at 1p.m., she’ll happily show up at 11a.m., because she came early. Sometimes she wouldn’t come at all, something came up.

They both warm up quickly. When my sister first took me to Gilda it was on a snow day in February. I travelled by wheelchair then with the help of my husband. We had to be there at 10 a.m. It was a lousy day. I remember arriving through the red door, ignoring my twins and my dad because I didn’t want to be there. When it came time to pencil in available times for a session with a social worker, when the sign in board landed on my lap my time had already been filled in, I became enraged. “Can’t I make any decisions on my own?” I have been going to Gilda for nearly 4 months now; a steady two or three times a week. The Club that my twins forced me to go on that snow day no longer interest them. They’ve move on to other interests; their lives.

I don’t profess to have a magic formula for families with a sick member. I don’t know the kind of person I would be if roles were reversed. But for now I need all the help I can get.

 

Hope

“We face the reality we’ve been dealt” – that’s my quote. Because I can’t say much about goals either; although my husband and my goal is to move to Hawaii before fall to escape the New York air and weather once and for all.

In February, half way through my treatment I attempted to take my own life. My pain had become utterly unbearable. My head was blowing up. My skin was on fire. I could only get 4 hours of sleep a night with ambien. This from someone pained a whole day without knowing she had appendicitis and had emergency surgery the same day. I couldn’t take it anymore. 

It’s now April, I’ve gone through most of the radiation and chemo pain, I’ve started walking again, have a pretty decent appetite and have even tried shopping and eating out. I go do activities everyday to keep myself busy (to distract the pain). I can sleep a good 6 hours on my own. I see that my body wants to heal itself. It is getting better. So why shouldn’t I? That’s my hope. Playing the card that I’ve been dealt with. God has a plan for everyone and this is mine. I will walk it with the tools that He’s given me and see where He leads me. 

I tell my husband that one day we will look back at this and talk about 2014 and it will just be a year in our lives.