The thing about facebook, friends, and cancer

"Does she not know that I'm dying?"

Those words stung like daggers in my heart. Recently, a cancer warrior told me that her friend stopped being there for her, a friend who she leaned on for support at the very beginning of her journey. She stopped checking in on her, asking if she needed assistance with anything or seeing how she was doing.  As she put it, her friend just "forgot" about her. Despite physically distancing herself from her, Facebook allows for passive communication. Her friend would post status updates and the cancer warrior could see bits and pieces of her life. And vice versa. Her friend felt like going to a movie. The cancer warrior felt like she was hit by a bus. It sounds horrible knowing that sometimes life just gets in the way. And some people just don't know how to divide their time. Still, it makes me wonder, why wouldn't she be there for her during the lowest point of the cancer warrior's life? Doesn't the word "terminal" mean anything? With all the technology we have these days, isn't it so easy to just to send an email or a text to see how she's doing? My heart ached for the sadness she must have felt. She was dealing with the reality of her own mortality, and on top of that, the pain of knowing that someone she counted on seemingly stopped caring. I'm sure her friend does care and feels so much sympathy for what she's dealing with, but actions speak louder than words.

For so many people with cancer, social media can be a godsend. It's easy to update friends about their current condition, find support, and even raise funds to help them with their journey. On the other hand, logging onto Facebook can make them feel even more alone.

As I sit in the hospital room, where I've been since October 6, I admit I get envious of people living it up, going to parties, going on trips, trying new food or recipes, etc. Facebook reminds me of the things I am unable to do. It also reminds me of the friends that simply "forgot." My time is taken up by massaging my mom's arm and legs, and trying to make them less swollen (using a "lymphatic drainage" technique). Whenever she needs to turn over, we have to use the bed pad to help swing her body from one side to the other, while making sure the IVs and catheter don't get in the way. My mom is literally swaddled with about 8 pillows on the bed, propping this limb or making sure she stays in one position. Getting her to the bathroom takes at least 10-15 minutes, propping her up and bringing her to the bathroom, while she's still hooked up to the machine. She gets up in the middle of the night about 3-4 times, so me and my brother take turns being on duty. We try to get her to walk at least twice a day. We try to get her to eat. About 4-5 doctors stop in to check on her and update us on how she's doing. And in between, I try to get my work done. That is my life.

On Facebook, I see people complaining about trivial matters and I think, if only you were in my shoes. I see people use the word "cancer" as a horrible analogy or using it like it's a bad word, and I wish I could smack them. Like someone posting, "Your poor grammar is giving me cancer." Others post about relationship troubles and I think, if only that was the worse thing in my life right now. Most hurtful of all, I feel let down by the people I'm closest to when they seem to have time to post about a recent activity or adventure, but won't text or email me to see how I'm doing. It takes literally 10 seconds to say "I'm thinking of you."

Maybe I'm bitter. Ok, not maybe. I just am. And I struggle to wonder why this hurts me so much. In the grand scheme of things, I should not care about those who are not there for me, and just care about my mom. But I just wished that people who not are dealing with cancer would know how meaningful it can be when cancer warriors and caregivers really feel the love from others, rather than a half-hearted "let me know if you need anything." What's worse is when I actually reach out and I get no response.

What People with Cancer Want You to Know

From the book, Help Me Live: 20 Things People with Cancer Want You to Know by Lori Hope. Sadly, the author passed away recently from lung cancer. Here is her obit. 

(I also added some of my own 2 cents).

Six of the “20 things people with cancer want you to know”

- “It’s okay to say or do the ‘wrong’ thing.” [Just don't disappear because you're afraid you'll hurt me] - “I like to hear success stories, not horror stories.”
- “I need to laugh – or just forget about cancer for a while.”
- “If you really want o help me, be specific about your offer, or just help without asking.’
- “I need to feel hope, but telling me to think positively can make me feel worse.”
- “I don’t know if I’m cured, and bringing up my health can bring me down.”

Some of the top 15 things you can do to help (after you ask permission, of course)
- Set up a prayer or silent unity group.
- Bring animals to visit.
- Do research for the patient.
- Rub the patient’s feet.
- Send cards, postcards, and letters.
- Pay to have the patient’s house cleaned [or check out "Cleaning for a Reason"]
- Offer to clean out the fridge or pick up the mail during hospital stays (my .02)
- Offer to pick up food (my .02)
- Do something for the patient’s spouse or children.

Beware: a few of the 26 common words, phrases and questions that can sting
- “What’s your prognosis?” Prognosis is a medical term, and it is often associated with the word “poor.”
“Are you in remission?” Said one survey respondent, “The term ‘in remission’ indicates that the cancer is lurking somewhere in your body, and it is just a matter of time as to when it will return. It makes me anxious just to hear it.”
- “Pray for a miracle!” Although most people like to be prayed for, saying that they need a miracle implies they have a poor prognosis.
- “You’re going to be just fine.” As Dr. Lawrence LeShan said, “Don’t tell me things you don’t know anything about. Don’t tell me I’m going to get better, don’t tell me I’m going to get worse.”
- “You even lost your eyebrows and eyelashes!” Saying that to a person who has undergone chemotherapy can just make them more self-conscious.
- Before chemo: “You’ll have so much fun picking out wigs!” “Fun” is not a word most people with cancer like to hear associated with their disease.
- Don't ask how long I'll be on chemo for. Instead, ask what the treatment plan is. For many people with stage 4 cancer, they're on chemo for life or until they decide to stop treatment. (my own personal pet peeve)
- Don't ask how I got cancer. Just don't. (For the record, my mom did not smoke, drink, have diabetes, high blood pressure, or do drugs -another personal pet peeve)

Some of the 22 things most people with cancer like and want to hear
- “I wanted to hear that people loved me, that they would be by my side through this entire ordeal, that they would do anything at all that I needed, that they would be with me even if I didn’t need anything at all.”
- “Mostly I wanted to hear that they were concerned and loved me, that it mattered that I was sick, that I made a difference in their lives.”
- “I wanted and needed to hear: ‘I’m going to the supermarket. Do you want to come with me, or can I pick up some items for you?’”
- “I would have liked to have heard that it was normal to have feelings of depression.”
- “My husband said things that were comforting like. ‘It’s so horrible what they’re doing to you.’”

Still in hospital, still hoping for better days

After removing the catheter bag, my mom's bilirubin began to climb slightly again, instead of going down slights. So they reattached the bag and my mom's count went from `14.4 to 11. I am still hoping it will continue to trend downwards and reach normal range. My mom is so tired and getting thinner because she eats very little. I try not to push her to eat more because I don't want her throwing up. Her legs, feet and left arm, hand are swollen and fat. I'm hoping that when she has the saline drip removed, it'll go back down. So much to hope for, just taking it day by day..

Things are never easy...

Today, my mom spiked a fever. She felt miserable and made continuous moaning sounds. Originally, she was supposed to be released today, but she ended up getting what doctors suspected as bacteremia. The interventional radiologist irrigated the bile duct and capped the catheter, removing the outside bag. My mom will still drain the bile, but it'll be naturally this time. Anyway, when she got back to her room, she ended up hyperventilating, her blood pressure shot up, and she was shaking continuously. It was a really scary time. I hate feeling helpless in that way.

I want her to have more time, but I don't want her to suffer. That is no way to live. I want my mom to enjoy the rest of her life however long or short it may be, and not be confined to the sofa or the bed, not be able to enjoy her favorite foods, or stay alert enough to watch Biggest Loser with me and laugh at the contestants crying over Bob or Jillian. I want to see my mom smile and laugh. I want her to make a politically incorrect joke and be her sassy self. I want her to be able to dance with my brother at his wedding, and beam with pride. I know my mom most worries about me because I'm single, I don't have someone to depend on in that "significant other" type of way, but I tell her, no matter, what I'll be ok.

I don't want her to suffer. Please let my mom have more time, let her have better days, let her be my mom for much longer than the doctors say.

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."

The final stages of life

This morning, the doctor attempted a stent procedure to relieve blockage in the bile duct but was unsuccessful. We had the option of choosing to relieve blockage with another procedure which would empty waste from the bile duct into an outside bag that would be attached to her. It would be an invasive procedure and if successful, would only buy her weeks. 

After consulting with family, we decided comfort care would be best. We chose hospice. She's now comfortable but my heart hurting so much. My brother did ask my mom her opinion and she said that if it'd allow her to see my brother get married next month, she'd do it. However, we knew that the chances of that happening would be highly unlikely. 

Yesterday, she had such a high temperature that she was unable  to speak. Her eyes were open but she wasn't talking or responding, making sounds but that was it. We were afraid it was because she was too tired. When my brother and his fiance came back from New York and brought porridge, we tried "encouraging" her to eat. One opened her mouth by nudging her bottom lip while the other fed her with a spoon. Then later, fearful of her becoming more dehydrated, they used a straw to try and drip water into her mouth. At around midnight, we convinced the nurse to start an IV with saline solution. 

This morning, my brother kept trying to talk to her for hours, but nothing. Then two hours later, the nurse came in and said Good morning and my mom said, "Good morning!" We were so shocked to learn she came back out of the fog.

We kept our fingers crossed that the stent procedure would be successful. But it was not. Doctor said she has days left. In the midst of tears, heartache, and exhaustion, we also knew that we needed to have a will and power of attorney in place. A few days ago, I did it through legalzoom.com. I was told by Lorita of This Cancer Thing Sucks that if anything were to happen with my mom, things can move very slow in the court system with dividing out assets to me and my brother. So it was done. But it was still enroute, and remembering how my mom was yesterday, it was best to do it ASAP, while she was lucid and cognizant.

I am so fortunate to have great friends, family, and coworkers. (Also, big shout out to my stomach cancer warrior and caregiver facebook support group). I texted a coworker who is an attorney, who texted another attorney coworker, who called and told us word for word, how to write the will. Then we called a notary to come and notarize it. The notary lady questioned why we were doing this so suddenly and why we didn't do it earlier. We had to convince her we were not taking advantage of the situation, and that we didn't realize how our time might be so limited until now.

My brother called our extended family and close friends to pay a visit to her. Family gathered and though my mom hates being seen in this way, I think she really felt the love by everyone. My brother has his ipad and recorded some touching moments with her. Being that my mother will most likely not be there for my brother's wedding, this morning he and his fiance did a tea ceremony (pouring tea, offering it to her, and saying "Please drink tea mom"). It's a very simple gesture but it's very meaningful and a sign of respect. At night, my brother laid on the bed with her and they danced the mother and son dance holding and swaying her hand to this classic Chinese song: 月亮代表我的心 (The Moon Represents My Heart). My mom even sang along to it and during some parts, my brother buried his head onto his pillow to hold the tears.

As I write this, my mom is resting peacefully and I am by her side. I know that no matter what, she will always be in my heart. (though it does not make it easier).

月亮代表我的心 (The Moon Represents My Heart)
You asked me how deep is my love for you
and how much do I love you.
My feelings for you is true
and my love for you is true
As the moon represents my heart towards you

You asked me how deep is my love for you
and how much do I love you.
My feelings for you are steadfast
My love for you is unchanging
And the moon represents my heart to wards you

A Soft kiss from you
have indeed moved my heart
This deep love that is present
Keeps me longing until today

You asked me how deep is my love for you
and how much do I love you.
So I ask you to think about this
and ask you to take a close look at this
as the moon represent my heart

The Scariest Moment of My Life

On Saturday, my mom threw up. Once at 6am. And then another time at 7pm. I knew I needed to take her to the hospital. I had the bags packed. My mom wanted to brush her teeth before we headed out. I was downstairs when I heard a clang. She fell. She was on the floor, her eyes open, holding the toothbrush, but she was unresponsive. "Mom, are you ok?" No response. She was also trembling. I feared she was going into a seizure or stroke. I ran to call 9-11. Then while on the phone with the operator, my mom regained her strength and said I'm ok. No need to have the ambulance come. But since I already made the phone call, they came. We waited as they approached our house. After gathering the necessary info, my mom walked a few steps and fell/ fainted again. They carried her onto the stretcher and we rode in the ambulance to the hospital. The sirens were screaming. Lights were flashing. And all I could think about was my poor mom.

Now, we've been at the hospital for a few days now. The GI doctor who did the scope said the tumor in the stomach is large and she has several, about 6 spots oozing. He could not cauterize those areas because he said it could make another spot bleed, sorta like "whack-a-mole." My mom got two bags of blood, but she is still very tired. She sleeps most of the day.

I got off the phone with our oncologist who said another GI doctor we know could attempt to cauterize it, but mom needs to be well enough to be released from the hospital. I've also called Sloan Kettering to look at options. I know we're facing the worst, but hoping for the best. I just hope my mom's tumor stops bleeding. My brother's wedding is less than two months away. Please let her regain strength.