Went over a friend's house for dinner tonight and stayed until 11:30pm. Then I came home to an empty house. I realize I no longer have that nagging feeling of being away from my mom. I no longer worry about how my mom's doing, if she's eating or needs me. I no longer have my mom calling me to hurry home so she can just lay on my lap or hold my hand. It's these moments that I just repeat over and over, "My mom died. She's not here."

Yet, she's everywhere in the sense that everything reminds me of her. I don't miss seeing her so weak, but I miss her smile, her warmth, her soft touch, her everything. I used to think everything happens for a reason, but now I think that sometimes bad things just happen without rhyme or reason (good things too) and we must just trudge on because we have no choice.

I know no matter what, my mother's love will sustain me.

The day before the funeral

My mom passed away on Sunday November 11th - just 13 days before my brother's wedding. I remember when my father passed away, it was very hard to accept. I was not there when he died, I just had to trust that he was gone. And on the day of the funeral, I didn't recognize him in the coffin. He did not look like the father I remembered. There was a closet near the bathroom in the funeral home and I recall thinking "he could be locked up in the closet, or somewhere else, he's not really gone."

With my mom, I don't have that thought. We spent time with her after she passed, feeling her soft, smooth skin for the last time, giving her one last kiss on the cheek, feeling her hand touch the side of my face. She laid there, lifeless, but at peace.

In a way, I dread tomorrow. I fear she will not resemble the mother I knew, the mother with the warm smile and soft skin. To be honest, I have not really processed everything. It's not as though I don't believe she's gone. I know it. She's not coming back. But with my brother's wedding and tying up odds and ends here and there, I have not mentally prepared myself for tomorrow. I have not even picked out what I will be wearing.

After this publishing this post, I will sign off and pick out the clothes for tomorrow. I will write a letter to my mom. In Chinese tradition, we burn paper money so that our loved one will be taken care of in the after life. In that same fashion, I will also burn the letter.

My mom has always said that even when she is gone, she will always watch over me. I hope I have enough strength to get through tomorrow.

Not her time.. (but when is it ever?)

Since my mom was admitted to the hospital, things have just been crazy and overwhelming. My brother and I have been pretty much camping in the hospital. We are consistently told that we are great children to be at our mother's side. We never leave her by herself. We appreciate their kind words, but it's like, "She's our mother." Last week, my brother's fiance was with us as well. She slept on the sofa, my brother slept on the floor, and I slept either on the recliner or beside my mom in the bed. We took turns helping her up at night to go to the bathroom.

Our room/ sleep space.

When my mom was admitted to the hospital, she was so weak, she couldn’t stand up. After a series of tests, we learned that her liver was failing, she had two separate blood infections, and the tumor in her stomach was actively bleeding. It was bad news upon bad news. We were told her days were very limited. The disease had spread and caused a bile duct obstruction. Bile in my mom's body was building and they attempted to relieve the obstruction by placing a stent. However, it was completely blocked. In her weakened state, we were encouraged to just let things go. Surrounded by our cousins, aunt and uncle, we made the painful decision to just make her as comfortable as possible. But we also agreed to palliative radiation targeting the tumor in the stomach so at least she would not bleed to death. The infectious disease doctor ordered antibiotics to fight the blood infections. We decided to continue this care until the antibiotics stopped working. Doctor estimated a week. Being at the hospital almost 24/7 has made time kinda blurry for me, but I recall sobbing and tears just pouring from my face. At one point I buried my head in my mom's arm, and my cousin patted me, repeating the phrase, "This is life."

The next day the hospice nurse stopped by and asked us to sign paperwork. I explained that we wanted to continue the antibiotics if it could buy us some extra time so that family and friends could come by. The hospice nurse told us rather coldly that the blood transfusion and antibiotics were not going to delay what was happening to her. Still, we decided to hold off from signing the papers. We then contacted the oncologist at the hospital who supported our decision to continue with palliative care until she reached the point where hospice was needed.

We were in this limbo phase, feeling time slip away quickly and trying to make whatever time we had left as meaningful as possible. At one point, she lost her ability to speak. Her eyes were open but she couldn't talk. She could make sounds but she couldn’t make words. My brother stayed up with her trying to talk to her, get her to eat. He tried again the next morning, but no response. Then a few hours later, the nurse came by and said, “Good morning.” My mom responded, “Good morning!” She came back. When we told her what happened, she said, “Shut your mouth!” She had no memory of it.

Mom's coworkers visiting.

We felt the clock ticking even more. We grieved for what was to come. We tried recording special moments including conversations with visitors just to save her voice. We tried savoring every moment. We thought about the wedding she’d miss. My brother laid next to my mom and “danced” with her swaying her hand side to side, playing the song she picked for the mother/ son dance for his wedding. Using Styrofoam cups filled with Lipton tea, my brother and his fiancé performed the traditional Chinese tea ceremony, with my mom acknowledging her as the daughter in law and both children giving thanks. That night, my brother went home and spent six hours scanning old photos. When he came back at 2 in the morning, he went through the photos with her. He wanted to remind my mom of her life before cancer. Our extended family, friends and coworkers came by and my mom really appreciated the love. When the visitors came, she’d tell us not to tell them about her condition because it’d only make them feel helpless and sad. She was aware of what was going on, but sometimes she’d forget. One minute she was telling my aunt that she only had days left and that they should be buried next to each other by their mother, and the next, she proposed going on a trip to Mexico with the whole extended family.

Then several days ago, her counts stabilized and we were told we could try to relieve the bile duct obstruction by placing a catheter and emptying the bile into an outside bag. She also had a staph infection and her port needed to be removed. If these procedures were successful, this would give us more time.

As her condition improved, so did her memory. She realized people were visiting her because they heard about what was going on. And then she asked us, “So basically, you’re waiting for me to die?” We knew she was feeling at least well enough to kid around because she then called us murderers. My brother said, “Don’t say that.” And she said it even louder. (It was in Chinese).

special moment between mother and son

The catheter procedure was successful and she will at least be more comfortable. This in no way will solve the underlying reason for the blockage which is cancer, but it may prolong her life. These past few days, she's even been able to get up and take short walks.

mom walking

The doctor says she can go home on Tuesday. They’ll bring medical equipment including a hospital bed, commode, shower chair, walker and wheel chair. My mom is not happy about the hospital bed, but my brother said, it's about what she needs, not what she wants. I told her she doesn't need to sleep in it.

I'm taking everything day by day, hour by hour, minute by minute. I am cautiously optimistic and holding my breath, managing my expectations. We went from thinking she'll be gone in a few days to now getting discharged. This is good news but overwhelming at the same time. It's just beyond crazy. I’m supposed to feel relieved, but I just feel like my heart has taken a major beating. Like we went through some sick and twisted dress rehearsal. We know things can change rather quickly, and in fact her counts are dropping again and she'll need 2 bags of blood. We're just hoping and hoping for better days ahead. And we're still pulling for a miracle.

Shoulda, Coulda, Woulda....

When diagnosed with cancer, choosing your oncologist is the most important decision you make. Your life is literally in his or her hands. And when you have stomach cancer, a disease without a standard treatment protocol, it makes things even more difficult. You may go with a doctor who chooses the drug regimen with the most side effects. Or you may go with a doctor in which "quality of life" is the most important, and chooses the drugs that have the least side effects. When diagnosed, my mom had the option of going with EOX, a 3-drug regimen comprised of Epirubicin, Oxaliplatin, and Xeloda, or Cisirino (cisplatin and irinotecan). We went with the two-drug combo. The doctor said that while EOX had a better outcome, it was only a difference in 1 or 2 months. In addition, no one knows how someone will respond to the drugs until they do it. There are companies like Rational Theraputics that can test a "live" tumor sample with chemo drugs, but it is costly and doctors remain skeptical of how effective it is. Having said this, I probably would have gotten it done.

Choosing the chemo regimen is tricky. Drugs with the more aggressive side effects do not not correlate to a better outcome. Just because you're suffering horribly does not mean you're also killing the cancer. Do you go with a doctor who manages your expectations and tries to prolong your life as much as possible without diminishing your quality of life? Or do you go with the one that believes you can be the exception and goes as hard as possible? I'm sure people may think, "I'd go with the doctor that will fight as hard as I will," but what does that mean? Especially since chemo for stage 4 patients is considered palliative. You're told they can treat the disease, the drugs may prolong your life, but they won't get rid of it entirely. There are people that go through chemo upon chemo without much success. At the same time, there are people who have great success from chemo and reach NED status (no evidence of disease). There are also people that just decide to live the rest of their life without treatment because they know one day, the disease will begin to outsmart the drugs and get sneaky. For many that choose chemo, despite being told it's palliative, you still hope it can cure you. And it does happen. But for the majority, it does not.

It's a conundrum. And throughout this journey, it does not get any easier. The longer you fight this disease, the longer you think about what you could have done differently. 

What I would do differently:
Disclaimer: these are just my thoughts going through my head

1. Have tumor sample tested against various chemo drugs, using Rational Theraputics, to determine the most effective protocol. By having a chemosensitivity test, your cancer is exposed to many possible treatments.
• At this point, my mom has had so many drug regimens that I don't think it would be worth it. It's also very expensive and not covered by insurance. In addition, doctors remain skeptical of this.
2. Bring my mom to Dr. Ajani at MD Anderson in Texas. 
• He's the leading expert in stomach cancer.
3. Consider a clinical trial early on.
• At this point, my mom is only able to do phase 1 clinical trials because she's been through several lines of treatment. With phase 1 trials, there is limited evidence behind the drugs that it will be effective. The limited evidence may be promising, but you really don't know. Phase 3 trials have already gone through phase 1 and phase 2. Since treatments are very limited, it may give you the opportunity to take advantage of drugs that are on the verge of FDA approval. And adds another drug to your arsenal.

Palliative Care Vs. Hospice Care

My mom is still receiving Hospice Palliative Care. I didn't realize this until the oncologist told us that. Since she was given blood to treat her low hemoglobin count as well as antibiotics to treat her blood infection, these were measures that might prolong her life. In hospice, you're only give drugs to help relieve symptoms like morphine for pain. Initially, we assumed hospice care was the next step. We didn't know we were in this "limbo" phase. We agreed that she will continue receiving palliative care until the antibiotics stop working and she's no longer lucid because eventually, being pain free will come with the trade off of sleepiness/drowsiness. Most hospitals won't allow you do in-patient hospice, but this hospital has made an exception. The hospital at Robert Wood Johnson in Hamilton is nice and my mom's room is fairly modern. We did not want to transport her to a hospice facility when the care here has been excellent. My mom has been in fairly good spirits. She's feeling lots of love from friends, coworkers, and family that stop by.

My brother explained to my mom that her time is limited. She knows and she's not scared. She just wishes life wasn't so unfair, a sentiment we all feel. She's such a strong woman. She even told my brother not to tell the visitors about her situation. She's like, "Don't tell them that I don't have much time left because it'll only make them feel helpless and sad."

Family BBQ

My bro manning the grill.

Happy Labor Day! I am happy to report that my mom is feeling a lot better. I say this nervously because I know things can always change and rather quickly, but for today and the past few days, she's been doing better. Her appetite is still not that great...mostly because she says everything tastes bad, but at least she'll have a few bites and won't throw up. I've been giving her 5 ml of megace every day for the past 4 days. The nurse practitioner we saw on Friday said that it might take a little bit before the appetite stimulant, well, stimulates. She had chemo on Friday and I was surprised that all her counts were in normal range- her platelets, white blood cell (WBC) and red blood cell (RBC) count. When her blood was taken on Monday, her platelets were still at the 60 range so she couldn't get chemo. But by Friday, it was at 203 (lowest of normal range is 150), so chemo was a go.

On that same day, my cousins (on my mom's side) who've recently moved here from China and Taiwan told us they wanted to visit. My mom was like, "sure, whatever," but I was nervous about how she'd feel in the next feel days. But all in all, it turned out to be a nice get-together. All my cousins' kids are boys ranging from 13-28 years old and they eat like beasts. Last time they came, my mom literally gave a face of horror as we watched them come back from a game of basketball and just swallow the food whole without taking a breath. With my cousins coming over, I decided made sense to host a barbecue. We also invited my cousins on my dad's side.

 The boys:

scarfing down chicken

Other than eating and visiting the local Walmart, my brother gave the boys some exercise training. My cousins also joined in on the "fun." We went to the park and my mom watched in amusement as they suffered through sprints, high knee jumps, push-ups, squats, jumping jacks, etc.

Although having guests over means that I need to get the house "ready" for guests in terms of cleaning and shopping, I think the extra company is nice for my mom. Since she's been off work for a while, I'm usually the only one she sees most days. And they also don't come empty handed, bringing dim sum, Chinese take out, Chinese newspaper, and fruit.

Two of our youngest guests had birthdays coming up so we got them cake and presents.

My mom and my cousin Tracy's children

note the Christmas wrapping paper ;)

giving my mom some love

I made some great burgers and thought I'd share the recipe:

3.25 lbs. of ground beef
3 tablespoons milk
1 egg, beaten
1 1/4 cup of bread crumbs
1/4 cup of olive oil
1/4 cup of chopped onions
3 tablespoons of chopped cilantro
2 cloves of chopped garlic
salt and pepper

1. Preheat grill for high heat.
2. In a large bowl, mix the all the ingredients using your hands. Season with salt and pepper,
3. Form the mixture into hamburger patties.
4. Lightly oil the grill grate. Grill patties 5 minutes per side, or until well done. 

stage 4 stomach cancer blog

When roles reverse

I'm 27. I know that at this age, my mother already lived through a number of hardships, struggles, and tough times. But she at 27, she also found love and happiness. She found my father. She found America. She found opportunity.

My mom has worked hard all her life. She told me that even as a child, my grandma worried about her extreme work ethic. She would say, "you can work and work, but it will never buy you all the money in the world, so don't work so hard." She's the type of person who would see an annoying spot on her car and try to scrub and scrub and scrub it away, only to be left with added scratch marks to the car. She's also the type of person who would wear latex gloves over winter gloves as she washed the car herself in 20-something degree weather.

When my dad died, my mom worked more. She hardly attended any of my after school activities because she was working. I think I made my mom feel guilty not realizing that she sacrificed so much for the sake of her children. But it was what it was. I have memories of seeing my mom's car in the parking lot after school and running home with a huge smile on my face, remembering it was her one day off.

Without a doubt, my mom and I are really tight. I'm with her every step of the way in this "journey" and I'm often scared as hell. But no matter what, I will stand by my mom's side.

The only thing is, now that my care giving responsibilities have stepped up, I feel like I'm always one step behind. I'm taking care of my mom the best I can, but it seems like I'm always a bit short on getting a handle on things. The house is not as clean. My cooking is not up to par and usually a crap shoot. Balancing work and care giving has become difficult. Even though I'm 27, I still feel like I'm a child trying to play a grown up. I'm often scared shitless and my mind is never at rest. But I try to take things one step at a time. A few weeks ago, my mom went to take a bath and she had to call me in to help bathe her. I was uncomfortable for a second but then I put on my big girl badge and helped my mom. It honestly made me sad and reflect on how much things have change. As common in Asian households, I always knew one day I'd take care of my mom but I imagined/ hoped it would be much later.

The funny thing about time

Sometimes I want time to stand still, especially during the good moments, when my mom's feeling well and we're in good company. She's not tired and she's her usual energetic, funny and inquisitive self. There are times when I have trouble sleeping, or rather, it's more like I don't want to sleep because I want to drag out time, if that makes sense. I don't want things to move forward because the future is unknown and scary.  But then on other days, I just want things to fast forward a million times, so that she could be here when I one day get married or when she becomes a grandmother...hallmarks of life everyone deserves to experience. Even though I'm 27, experience-wise, I feel like I'm 50. And I'm feeling tired.

Young Adult Caregivers? Anyone out there?

Last month, my young adult caregiver support group meetings came to a close. I had blogged about my initial feelings of attending these meetings here. To be honest, in the beginning, I wasn't sure if it was the right fit. But when the sessions came to a close, I can honestly say I was glad I did it. I still find the private facebook group that I belong to (stomach cancer warriors and caregivers) more helpful and convenient for me, but this was the first time I actually met young people face to face, going through what I was going through.

Attending the young adult caregiver support group represented time that I had to make for myself. It allowed me to cry and express my emotions in front of strangers. It helped me process things that I was holding in that day.

When I first joined the group, it felt a little like an AA meeting...or at least what I imagine AA meetings to be. Everyone sitting in a circle, waiting for their turn to reveal their story. In a addition, it was a bit of a trek getting into the city every Tuesday. There was always traffic. One time, I made the mistake of taking the Lincoln Tunnel and cars moved at a snail's pace. When I finally got into Manhattan, the meeting was already over and I basically had to just turn back around into Jersey. Plus my mom would often give me errands to run of what groceries to buy in Chinatown or things to drop off to my brother. So I'd often get to the meetings either late and/or extremely out of breath.

The good thing was that I was able to express my feelings people in the group also felt and it was extremely cathartic. At the same time, I was one the few people who were actually directly care giving. Some were mainly dealing with the issues of having a parent diagnosed and not directly involved in that person's care. I think this is a really big factor and an important difference. That's why I often am able to connect with spouse's of cancer warriors because we can talk in "cancer language" without missing a beat. It is really a unique distinction.

But a few new people joined later and I even met someone who was caregiving for a parent with the same diagnosis, so I was glad to have made this connection. I think it just really hits home that there are not that many young adult caregivers out there.

Kairol Rosenthal wrote a blog post with some great tips of how to find a support group that's right for you. You can find her blog here. For convenience purposes, I pasted her post below.

September 01, 2011
Do Cancer Support Groups Work For You?


By Kairol Rosenthal

During my stint with cancer, I’ve attended both thyroid cancer and young adult cancer groups.  They ranged from excellent to abysmal.  Here are six tips I’ve come up with for making the most out of a support group experience. I’m curious if you’ve ever tried them:

1. Contact the leader first to see if it’s a good match for you. Ask if participants have a similar disease type or variation as you, what stage of their disease are they in, if the focus is emotional support or swapping practical medical coping strategies. If age, relationship status, race and ethnicity and other personal factors are important to you, ask about the demographics of the group.

2. Try a few meetings. Sometimes groups vary hugely from meeting to meeting depending on who is there and what issues are coming up.  Give it more than one shot.

3. Go out on a limb. If you want to discuss an issue that nobody is talking about, be daring and bring it up yourself.  Many support group participants are often waiting for that one person to talk about the elephant in the room.

4. Find your wonder twin. Sometimes a support group is a great place to meet one person who you really connect with.  It is perfectly fine for you to ditch the support group and continue to meet for one-on-one support with each other over coffee.

5. Chose a format that’s right for you. Telephone, online support groups, social networking groups, one-on-one peer support through matching organizations. People have even told me that reading Everything Changes was their support group.  If one format of support group isn’t right for you, find one that is.

6. Don’t feel guilty or badly if you are not a support group person. The point is to get support if you need it and it doesn’t have to always come from a group.  I personally find better support through my friends who do not have cancer than I do through organized support groups of people my own age living with my disease.  I’m okay with that.

Feeling thankful..

These past few days, my mom has not complained of any pain. I'm sure she has some discomfort as irinotecan is known for causing abdominal cramps, but she hasn't asked for oxycodone or other pain  meds. As I type, I know that I could be jinxing myself or speaking too soon, but I just wanted to stress how uplifting it feels when your loved one is feeling ok. It's amazing how much we take our health for granted, especially when all we want is to not be in pain. A few days after chemo, there were times when her body did not agree with food she just took a bite of. We try to encourage her to quickly spit it out and take deep breaths to prevent her body from vomiting.

Scan. Wait. React. Rinse and Repeat.

When you're diagnosed with advanced cancer, you get scanned every 3 months to find out the state of the disease...whether things are spreading, shrinking, stable or unchanged. And every time, it's just as nerve wracking. A few days ago, my mom started having shooting pain when she took a deep gulp or burped. She'd put her hand to where her stomach is. The worse is seeing your mom have pain or discomfort. It's a reminder of disease, of what it could or could not be, another tight, relentless squeeze in your heart.

PET/CT scan scheduled tomorrow, June 26 at 8:15am. Appointment with Dr is the following day, June 27 at 10am. And then we take it from there.

Just praying with all my heart, the new chemo is working, nodes are shrinking, vanishing, blasted into oblivion, and the pain...that's it's something else- pain from tumor shrinking, heartburn, hernia, anything but disease progression. If you've stumbled upon this blog, please send positive vibes our way. My mom's name is Nora.

Another Hospital Visit and the Capacity to Love

My mom started chemo last Monday, May 14. On May 22, my mom went to get her blood tested and visit the oncologist. She had a fever and her white blood cell count had dropped to .4. Normal is 10. She wasn't even at 1. She developed a neutropenic fever and we had to have her admitted to the ER. She hated the hospital the first time she was admitted and dreaded the thought of going back there. After all, she was only released a little more than a week before. When we arrived, they placed her in isolation since she had a very weak immune system. It was much more peaceful in the ER this time since she had her own room. No loud annoying constant beeping sounds...just lots and lots of waiting and waiting. We got to the ER at 11:30am and they didn't admit her upstairs until it was close to midnight.

I hate cancer more than anything and I feel a tremendous amount of indescribable sadness for what my mom's going through and others in this situation... cancer is simply not fair. However, while at the hospital ER, I also couldn't help thinking about those that have no one to depend on. I was gone for 2 hours and during that time, my mom soiled herself. She couldn't get to the bathroom in time. She told no one but when I got back, told me and I got a wet paper towel and helped clean her and change into clean clothes. There were patients in other beds connected to their machines beeping incessantly and no one to notify a nurse to turn it off. There were patients with no visitors for hours on end. A nurse came by and asked if she needed someone to wash her and my mom politely decline, knowing that her daughter would be able to do it. I never imagined that at 27, I'd be taking care of my mom like this..but all I can think about is I just want her feel better and know how much she is loved. My mom always says that people use the word "love" too indiscriminately (especially while watching The Voice, Biggest Loser, and other competitive reality shows- seriously they tell them they love the person way too much, just when they're about to vote them off), when it's really the actions that show someone how much you really care. One of the members in my online support group said it well when she talked about caregiving for her husband...the "capacity to love" really struck a cord with me.

Lana, I never realized my capacity to love my sweetheart until he got sick. What normally would have grossed me out, didn't phase me. All I wanted was for him to get better, stop stuffering, be happy, come home, so that our life could return to "normal." Your mother is so blessed to have you. You are a wonderful daughter. I'm praying for you and your mother. Hugs.

Mom chilling reading Chinese newspaper

It is now Memorial Day and while her white blood cell count is up to 3.7, her platelets and red blood cell count are still a bit low so she will not be able to go home today. Hopefully tomorrow. She now looks and feels better. She had a very sore throat and it hurt just to hiccup/ burp or eat food, so she ate very little. Her appetite is much better and we walk around the floor twice a day to get some exercise. Yesterday, my brother came home and bought some goodies from Chinatown, among other things: Chinese food and Chinese newspaper. The Chinese newspaper will keep her preoccupied for the rest of the day. She's a beast when it comes to reading lol.

One of my mom's neighbor's needs to be guarded 24/7 with two officers sitting on both sides of the door. Right now, one officer is inside, so this one needs to be extra attentive...you know, in case this maybe convicted felon who has cancer makes a run for it or jumps out the fifth story window. Who knows, but it's fun to make up stories about why he's there...helps pass the time.

Grasping at straws...

This was the email I sent to my friends and acquaintances, as well as church goers (for added efficacy), when I learned about my mom's diagnosis. I remember it felt like I was drowning. 

From: me
Sent: Wed Dec 02 17:59:31 2009
Subject: please pray for my mom
Today I learned that my mother has stage four gastric/ stomach cancer. The only cure is to remove the stomach. However, the cancer has spread and she must do chemotherapy before any other treatment or surgery can be done. If the chemo is successful, she can live five, six more years, according to the doctor. But I'm hoping many many many many... more years.

I am writing this email because I'm asking that you pray for my mom (her name is 'Nora' Lee). If there's even the slightest chance that prayer has the power to heal, I am asking you to pray. I also included a photo (here w/ my bro). Words cannot describe how amazing she is.

Thank you.

Lana