Friday, April 5, 2013

My mom's favorite pics

My mom had a unique and funny sense of humor. Through it all, she always found something funny to say. Above are two pics that always made her brother's sixth grade student picture, looking like a panda, and me, looking like a child of the third world (even though it was actually taken in San Francisco). My mom loved how round his face was with cheeks screaming to be pinched... that is how my my brother got the nickname "Fatboy" or "Fat" for short. And me, well, she took great pride in having taken the picture, after later realizing that I could easily be in one of those "For a dollar a day" poverty ads.

Saturday, January 5, 2013

How does it feel?

For a while, it's been hard to put into words, but I think I know now. When my mom made a turn for the worst, it was like a dagger entered my heart, and as she declined, the dagger twisted and jerked it's way through.

Deep sadness, grief, and despair poured through my veins. Day after day, we mustered as much self-control as we could to stay strong and brave.

Then, in a single instant, she was gone. I was mentally and physically drained. I don't have anything left.

(My feeling when people say I'm handling this so well)

Friday, December 7, 2012

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.

Thursday, November 15, 2012

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.

Monday, November 5, 2012

The next few days...

My mom has been more or less stable at this point. She's developed edema throughout her body because of lack of nutrition/low albumin levels. My brother and I try reducing the swelling by lightly massaging and moving her skin towards the lymph nodes in her body. It usually works. But as always, it eventually builds up again.

The oncologist said that unless she spikes a fever, she might get released within the next few days. The doctor said that this might be the best she'll feel and we should take advantage of this opportunity. Coming on the fifth week of staying almost every night in the hospital room, we almost were in disbelief. At the same time, we know that we need to take everything day by day and things can change at any moment. Also, we need to be as prepared as possible for her care at home.

Healthy Jello Option.
Eating is a huge challenge. The mass in the stomach prevents her from eating much and food will cause pain. At the same time, without food, she gets puffy and very fatigued. We're trying to get whatever we can through...mostly liquids and jello. Sometimes oatmeal or cereal with soy milk. It gets difficult and my brother and I take turns encouraging her, playing bad cop/ good cop.

Sometimes I feel bad pushing her. But it is her goal to make it to the wedding, and we want to do everything possible to give the greatest chance of that happening.

Speaking of jello, I just tried this brand: Jeannie Prebiotics Gelatin-free Dessert. It's high in fiber and Vitamin C. We just tried peach, and I can say, it's Mama Lee approved. I figured if she was eating jello in the hospital, might as well make this and get some vitamin C in her.

Please let mom feel well enough to listen to me!
It's been really helpful having my brother here. We are way pass the "cabin fever" phase. It's more like, we've accepted the hospital is our new home. I freely walk around in this robe my mom made many years back, out of a blanket.

Tonight, my brother went back into Manhattan to take care of some errands including wedding stuff. This means that tonight and tomorrow night, I won't have anyone helping me. Well, aside from the nurses. It's a bit scary. For me and my mom. No question, my brother is strong and my mom trusts his strength. Me...not so much. And getting up 3 to 4 to 5 times in the middle of the night is very exhausting.
Push the bed up. Lean Mom's legs towards the floor. Edge closer off the bed. Rest. Hold tight and lift her up. Slowly turn in the direction of the commode. Have her sit. Get bathroom paper ready. Wait. Wait more. When she's done, lift her up. Pull up underwear. Turn body towards bed. Sit. Rest. Lift legs and shift her body. Use pad to move body in desired position. Place pillows to position her. Rinse bucket. And Repeat.
I am also charged with taking her for a walk tomorrow and feeding her. Lots of pressure. Both very daunting tasks. Hoping Mom is feeling well enough and can eat more.

Thursday, November 1, 2012

Turning Point

Today, we learned that my mom's platelets and hemoglobin count dropped low enough to warrant a blood infusion as well as platelet infusion. They are seeing if my mom has yet again, another infection. We are pretty much at the verge of hospice, but we are still holding out hope that she can come around with the boost of blood and platelets.

Our tangible goal is that my mom will be able to make it to my brother's wedding which is on the 24th of November, just 23 days. But that seems so far away. We are being realistic and my agenda also includes researching hospice companies to see which we would go to if it comes to that point. She did eat more today which is good.

We continue to surround her with our love.

Tuesday, October 30, 2012

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.