My favorite dish- sauteed crabs

My friends know that I am not a picky eater, but if there's one dish I love more than anything, it's sauteed crabs Cantonese style...garlic, scallions, and some black bean with garlic sauce. I don't eat it often, but when I do, it's like I've fallen in love all over again. Today, the supermarket had 6 crabs for $7. To my delight, my mom said she'd make it for me. I tried to help with the prep work though ripping apart the crabs kinda freaked me out, and I was trudging along until my mom came into the kitchen and told me to move out of the way. Honestly, I'd like to thing that if heaven had a flavor, it'd taste like sauteed crabs.

I'm spoiled at home because my mom does most of the cooking. I'd cook more but my mom said she wants to enjoy the food. lol.

Taxotere #2 and My Mom's New Hair

I was dreading my mom's second round of Taxotere since the first made her feel miserable. She felt like she had the flu and experienced extreme fatigue. She was out of breadth just sitting up. All her hair has pretty much fallen off, which makes her depressed and confirms that she's sick. When you look normal or like everyone else, you can sometimes forget about the disease, but when it's staring at you in the face, it's weighs heavy in the heart. My mom gets tired of dealing with this disease and I sometimes am at a loss of comforting words to say, so I just give her a hug. For the second round of Taxotere, the nurse informed us that she would be getting Neulasta the day after to boost her white blood cell count. Neulasta can cause some unpleasant side effects like bone achiness and headaches. To combat those side effects, I had my mom take Claritan-D before, day of, and a few days after the Neulasta injection. (Side note- Claritan-D is now only available behind the counter at the pharmacy, because apparently, people have been purchasing it to produce meth). She did not feel well after Taxotere and Neulasta, but the side effects were not as bad as the first. Instead of diarrhea, she was constipated. Instead of being tired to the point of not getting out of bed, she was tired but able to manage. I hate this poison, but I'll love it if it does its job.

Without her hair, I know my mom feels different when all she wants is to just fit in. She had two wigs that she wore regularly, but one did not fit her normal hair style and the other, as my mom put it, looked like dried grass piled on top of her head. It was stiff and did not have any natural bounce to it. So I decided to splurge and get her a wig that I felt would be the most natural looking and comfortable. I went to Voguewigs.com and I found their prices to be reasonable - not super cheap, but not crazy expensive. I purchased the Allure Monofilament Wig by Jon Renau (#6 dark brown color). I think I love it more than my mom does, though I refused to tell her how much I paid for it. Mono Tops (the reason for it being more $$$) give the appearance of actual hair growth straight out of the scalp. Every hair in the monofilament top is individually hand-tied, one strand at a time. Each hair can move and swivel freely, just as hair moves when growing from a follicle. These type of wigs can be styled and parted in any direction, just like natural hair and it's also lighter.

Drum Roll please...

Mom wearing Allure Monofilament Synthetic Wig by Jon Renau

I was super nervous about the purchase because you can't return it if it's opened, and well, how can you tell it looks good if you can't open it? I was going to sell it on ebay if my mom didn't like it. But the wig arrived and Mama Lee approves, though it's a little fuller in the front than she's used to. Also, because it's so thin, my mom says wearing in during windy cold weather makes her head feel cold. I personally think you can't even tell it's a wig, but maybe I'm biased. I hope my mom won't feel self-conscious anymore because she's lovely, inside and out.

TIP: I have found that a wine gift bag makes for a great wig holder. You need something long and narrow so it doesn't stretch out. Place something heavy like a candle inside the bag so it doesn't fall and just hang the wig over the bag. Works perfect.

Taking the "Support Group" Plunge

Dealing with cancer is difficult, but dealing with it alone is unthinkable. My mom has her close friends and a few cancer "warriors" who talk to her regularly and provide support. The conversations start off with asking how she's doing and then move on to other topics like family gossip, cooking recipes, stories about life in China ages and ages ago, or current events. It's good to have her mind off something when she's talking to friends. Being at home and feeling unproductive can be depressing. Right now, she keeps calling herself an "invalid"... like "how can I be happy when I'm an invalid." To try and cheer her up, I bought a wig for her, so that hopefully she can feel more normal being in public.

Support is important. For me, I've found online forums and discussion boards not only a great resource, but also a place of comfort. It can be cathartic reading about people's own experiences and feelings that often match yours- fear, anxiety, hope, dread. It's that common bond or that club no one wants to be affiliated with. People starting treatment soon, or just diagnosed. People with advanced disease for x many of years sharing their experience and offering hope. People dealing with horrible or odd side effects and asking for advice. People who just need to vent. Oh, and there's a lot of venting and a lot of cyber hugs and "I feel you" messages. There's also a lot of TMI topics, like about poop, and...well right now, only poop comes to my mind, but you get the idea. What's so great about these online forums is the fact, that for the most part, you're anonymous. You share as much information as you care to. People only know you as "chemo cancer chick" or "grumpy monkey" or just "Rick." I can log on anywhere and find my people. And you get to know the "regulars" in each group- the people that butt heads, the people that are so funny, the people going through this "battle" and being honest without any filter.

Very recently, I decided to join a young caregiver's support group in Manhattan. I thought it might be comforting to find young people like me, going through what I'm going through. I felt it was like a gift to myself because I would literally be spending money to go into the city every week. (Of course, that also means doing grocery shopping for my mom while I'm there). Getting to my first meeting was a mad dash of sorts ...rushing into the city, dropping off food for my brother that my mom had made, dropping off mom's forms for filing a tax return...all before taking the subway to the 5:30pm meeting.

Out of breath and about 15 minutes late, I walked in. I saw a small group of people around a table. I waited and listened as the group moderator finished introducing herself and explaining the "ground rules" for the group. And then we all introduced ourselves. For the first time, I was no longer anonymous. I couldn't hide behind my teddy bear profile pic or my nickname. I looked around the table, all of us looking nervous, preparing to expose ourselves and our relationship with cancer.

I came away from the group with mixed feelings. Perhaps it's because the group is so small and everyone's situation is different. No one in the group is caring for their parent to the extent that I am for my mom. No one had the same disease. Some weren't really involved in their care, mostly because of distance. I know people say that cancer changes people and they have to find their new normal. But that's just it. I'm not normal. Even in a group for young caregivers, people "like me," I felt myself feeling rather different and just a tad bit more alone in this circumstance.

However, I will continue to go to this group because I made a commitment to myself and will keep an open mind. In addition, I found some useful tips from distant caregivers that my brother could apply  since he doesn't live at home. For example, he could call in at the doctor's appointment or participate by "skyping" into the meeting. I doubt the doctor would mind.

Sweeping of the Graves/ Qingming

Every year, Chinese families visit graves of their loved ones to pay respects. (Read more about this tradition here on wiki). With both my grandmothers and my father no longer with us, today's schedule comprised of three stops to three different cemeteries, one in Vallhalla, NY (dad's mom) with sloping hills and a lake nearby, and two in Linden, NJ (dad and maternal grandmother) with the lovely backdrop of industrial factories and the busy Rt 1 intersection. Cemetery workers anticipate this day, having extra people on hand to direct one way streets and preparing for extra clean up duty. In the cemetery where my paternal grandma is buried, there's a rather large Chinese section. People were carrying bag fulls of items to offer: flowers, paper money, roast pork, a whole chicken, wine, etc. According to my cousin Tracy, "Chinese people take the dead very seriously." And it is very true, especially from what we experienced this morning buying the traditional foods  to bring to the visit. My mom instructed my brother to buy three orders of roast pork with bone and white sugar and brown sugar cake. Even at 8am in Chinatown, there was a line out the door at Fong Inn Too, and at the restaurant, the cashier asked if my brother had "reserved" the pork order the night before. So, the morning started off with a bit of a delay.

As I looked around the cemetery, there were families huddled around a grave. One large family had an entire roast pig on a table (in fact, at every cemetery, we seemed to always find one pig). And about 30 minutes later, you heard the sound of butcher knife slamming against the chopping board. It's kind of a funny sight- people gathered around a grave stone having a pseudo-picnic, but I like how there's a holiday devoted to remembering your loved ones.  Many had very impressive spreads with paper money, more food, and fancier incense. We, on the other hand, had a small spread...some oranges, pastries, and an order of roast pork.

Just by chance, about 20 minutes after we arrived, I saw my cousins and my uncle and aunt heading over to where we were. This was completely unplanned and a nice surprise that they came around the same time we did. My aunt brought out paper money and paper cell phones and watches and paper goodies which we burned. I'd like to think that my grandma was up there and gifts of jewelry, money, and clothes are just shooting into the heavens.

We then headed to New Jersey and did the offerings two times over for my other grandma and my dad. My mom forgot to bring flowers to plant, but as luck would have it, the perennials planted last year we in full bloom.

After that, we just headed home. My mom wanted to make sure we did this sooner than later since her hair has been falling out. She's just let it fall so I kept a lint brush handy. She has a bald spot in the back of her head but just covered it by wearing a hoodie.  On Thursday, it'll be chemo #2.

Bouncing Back - NYC Weekend

This weekend, my friend, a leap year baby decided to celebrate her birthday in the city. I drove the car into the city and my brother drove the car back to New Jersey to visit my mom. This turned out well since I didn't have to worry about parking. I was worried about leaving my mom cuz she didn't even feel like getting out of bed and wasn't eating, but my brother was going to be there. My brother texted me later that night saying, "Mom won't stop eating" to my enormous relief.

In the morning, I met up with Linda and her friends to visit the High Line. (Took ACE train to 23rd street, entered High Line on 23rd and 8th St). The High Line is a public park built on an historic freight rail line elevated above the streets on Manhattan’s West Side. We walked around, absorbed the nice views, and relaxed on the sun loungers. I told myself I must come back here in the spring when the flowers are in full bloom.

I really do love socially awkward pics

Afterwards, we took a short walk over to Chelsea Market, where I had the most delicious lobster roll ($16).

lobster roll from chelsea market...it was bangin.

Chelsea Market is an enclosed urban food court, shopping mall, office building and television production facility located in the Chelsea neighborhood of the borough of Manhattan, in New York City. Built in the former National Biscuit Company factory complex where the Oreo cookie was invented and produced, the 22-building complex fills two entire blocks bounded by Ninth and Eleventh Avenues and 15th and 16th Streets, with a connecting bridge over Tenth Avenue. In addition to the retail concourse in the structure east of 10th Avenue, it also provides standard office space for tenants, including media and broadcasting companies such as Oxygen Network, Food Network, Mr Youth, MLB.com, EMI Music Publishing and the local New York City cable station NY1. Also, more recently, Google has moved into some of the second and fourth floors. (thank you wikipedia).

Linda, being the good itinerary planner she is, reserved tickets to the 9-11 memorial. At 2pm, we took the ACE train all the way down to Fulton Street and then after a short walk, we were there. I was really glad I went. I was blown away by the design of the memorial...how they could translate the enormity of 9-11 to a place of such dignity and reverence. The waterfalls were really beautiful, and at the same time, you could sense a heavy weight, a feeling of such sadness in your heart, amidst this beautiful, peaceful site.

9-11 memorial

crimson and cream cupcake (r) and coconut cupcake (r)

With dinner reservations at 7:30pm, I decided to part ways with my friends until then. We had some time to kill and they decided to head back to their hotel in midtown. I decided to go back to Chinatown; it was only a mile walk. I bought some groceries, bubble tea, and some roast pork buns. I chilled at my brother's apartment for a little bit before heading to Cafe Espanol (near West 4th), where we had a delicious dinner. Linda also had a $25 for $50 groupon, which made for a very reasonably-priced dinner. Afterwards, we walked next door to Sweet Revenge, where they have cupcake pairings with wine and beer (same concept as cheese and wine pairings). Yum!

They headed to the bar afterwards, and I headed home, but not before buying some takeout in Chinatown. Linda was great at planning her weekend birthday and everyone had an amazing time. For me, it was the break I needed. But aside from her awesome planning skills, she has mad good friendship skills. (Happy Birthday Leap Year Baby!)
To top the night off, when I got home, I saw that my mom had indeed gotten out of bed. I learned that my brother had taken her to the Cheesecake Factory, so I was glad she was up and moving again. Then at 1:30am, when I arrived home, we ate the chinese take out for dinner #2.

Food and Lee family go hand in hand...like peas and carrots, mash potatoes and gravy, and white on rice.

Waiting to get over the hump

Dr. said Mom should start to feel better by Monday, but it's still 3 days away and she is miserable. Stayed in bed most of the day, skipping dinner. At around 2am, she said she was hungry, so I made some old fashion oatmeal mixed with honey and some dried cranberries. Her sense of taste affects her already diminished appetite for food. An appetite stimulant and some "swish and spit" was prescribed to help alleviate her symptoms. I hope she gets her strength back soon because this is no way to live. I hate seeing her this way.

The sh*t hits the fan

... or another title could be "Just run with it" or "Sh*t happens (a lot)" ...

TMI ALERT

My mom was not prepared for the diarrhea that came today- Taxotere day 7. As my mom said, "It's like there's no faucet!" She's feeling pretty miserable and I feel helpless.

They say the worse part of the cycle is day 4-9 when the blood counts are the lowest. I also realize I'm not the only one. I hope she gets better soon.


Here are some foods to eat to stop diarrhea.

Day 6 on Taxotere #1

Mom came home last night - exhausted. I spent a good amount of time massaging her feet as she slept on the couch. I hope fatigue is the worse of the side effect. I know she'll feel even worse if she loses her hair. Work literally wipes her out. Those poor feet, standing up, walking the entire day, wiping down tables, carrying trays of food. I hope that the amateur massuise in me helps reinvigorate her tired legs.

They say if you have no appetite, try eating a smaller meals more frequently. Yesterday, after work, she  bought half a pound of a rack of lamb (@ $21 a pound @ Wegman's no less) and I boiled some watercress. Then a half hour later, she had some "gwey fa fun" - chinese pasta in the shape of flowers with some dried shrimp for flavor. I then washed some blueberries and plums for her to eat. She ate as though it's a chore, knowing she needs to but not feeling satisfied by the taste of the food.

My mom's health affects us all. A deep sadness because of the situation and sadness for the way our lives have changed so much. Just learned that my brother did not do well on his exams. Won't tell mom since she knows how much he's been studying. My brother tells my mom that when he achieves his Doctorate in Physical Therapy, she needs to be there. It's not a choice. She needs to be there. I think these things planned in the future help my mom keep going.

I can't imagine people who've been on chemo continuously without breaks. At the same time, I wonder if that's what kept them stable or disease free for so long. There's no clinical research to show maintence chemo makes a difference in overall survival, but at the same time, everyone's different. You follow the wisdom of the doctors you trust and essentially, your life is in their hands.

Dinner: tomato & egg stir fry and fishball watercress soup

Mom gets home soon. Made dinner and hopes she'll eat it. She's developed an aversion to eating meat so I made up the following dishes, accompanied with quinoa, a rice substitute. My cooking skills are very "meh." Maybe it's because I'm not a picky eater. However, my mother's taste buds are a little bit more refined.

Fishball watercress soup is very simple to make: watercress, ginger, and fishballs. It's sorta like a Chinese person's "chicken soup" -soothing and comforting. Next on the menu is tomato and egg stir fry. I added the eggs after so it didn't turn out as pretty as the picture below. Should have used this recipe before taking a stab at it myself.

Update:  Mom came home from work and was extremely tired. Had to rest before eating and after she ate, went straight to bed. She said the dishes turned out ok, but her lack of appetite makes it difficult for her to enjoy food. Sometimes this is very disheartening to see her so tired and I hope she feels better soon. Spent some time giving her a nice foot rub.

tomato and egg stir fry

fishball and watercress soup

The value of neuroprotective strategies

Chemotherapy-induced neurotoxicity: the value of neuroprotective strategies

Above is a link to a free article from the Netherlands Journal of Medicine through PubMed regarding the efficacy of various strategies to combat nerve pain. While there definitely needs to be a bigger study regarding the value of these supplements, calcium/magnesium infusion, amifostine, gluthatione, glutamine, acetyl-L-carnitine and erythropoietin have been shown to help.

My mom has been taking 10 grams of l-glutamine for seven days starting on the first day of treatment (though in trials, patients have taken 30 grams/day). Since the effects are cumulative and she's only had one treatment, there are no dramatic side effects so far and I'm thankful for that. Just fatigue and loss of appetite.

Juicing Red Cabbage

Ready to juice carrots, cabbage, beet, asparagus, apple, celery

Not long after my mom was diagnosed, we started juicing. There's so much literature on the benefits of it, but we're also careful to not overdue it because of the sugar content. Of course some people only juice vegetables and drink green juice, which is an option, but just not for us. We drink a large glass of the concoction once a day and that's enough for us.

We use a masticating juicer which churns/ chews the ingredients leading to much less pulp. While the pulp is dry, the prep time is at least 20 minutes. That's because we pretty much have to chop everything into bite-size pieces. Through trial and error, we've found what fruit and vegetable combination worked best for us in terms of the health benefits and taste. The main juice ingredients are carrots, an apple, half a beet, celery, and asparagus. Most recently, we added red cabbage because it serves as a digestive aid. The amino acid called glutamine that is prominent in cabbage has a cleansing effect on the entire digestive system.

Cabbage juice has been known to heal peptic ulcers, but if you've ever tried cabbage juice alone- well, it's kinda yucky tasting, bitter with an unpleasant after taste. As a result, I've added either tomato or blueberries to counter it and the yucky cabbage is concealed. We also add kale or spinach when it strikes out fancy...and kale like cabbage is certainly not my favorite vegetable.

Has it made a difference in my mom? I really can't say though I'd like to think it has. In any case, perhaps it gives us a sense of control, a way of being proactive in the face of something deemed uncontrollable. In addition, there are very good benefits to these ingredients:

• Celery: vitamins B1, B6, B2 and C within the stem
• Beet: vitamins A, B-1, B-2, B-6 and C, as well as folic acid, potassium, calcium, iron and fiber.
• Asparagus: lots of vitamins including vitamin C, iron and calcium.
• Carrot: beta-carotene, Vitamin A, and Potassium
• Apple: helps with memory
• Kale: vitamin K, A, C, and Calcium
• Blueberries: Vitamin K, Manganese, Vitamin C, Calcium
• Tomato: lycopene, Calcium, potassium and Vitamins A and C
• Link to Benefits of Juicing Red Cabbage

 

The Day After Taxotere

Mom was able to go to work today- the day after treatment, without any noticeable symptoms. She was told to take Decadron, a steroid, for 3 straight days starting with the day before chemo. So today is her last day on Decadron. I hope she'll hold up tomorrow.