Happy Birthday Marta

Marta without an h.

A little more than 6 months ago, Marta was diagnosed with stage 4 stomach cancer at the age of 30. Today she is 31. I wish her lots of imaginary cupcakes and cute kittens. (Although I have a confession Marta if you are reading this... I have an unreal phobia of cats and dogs. I hope you will still be my friend.)

I encourage everyone to visit her blog. She talks about what it's like living with such a diagnoses-- the raw emotions, the heartache, the pills and treatments, chemo brain, as well as the good moments we hope can last forever.

Just for a second, think about how you would feel if you were told your time on earth may be limited. It is something no one ever thinks can happen to them, but it happens way too often. Spoken by oncologists and doctors every day.I hope one day cancer can be treated like a chronic condition like diabetes.

Most of all, I hope for many many many many many many many many more birthdays to come.

Happy Birthday Marta!

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.

Carboplatin Day

Today Carboplatin was added to my mom's chemo regimen. She has already had 3 cycles of irinotecan alone. Day was as follows.

Day before: I went to bed at 5:30am trying to catch up on work

• 12:30pm: Mom wakes up and says, "Isn't chemo at 1pm?" I shoot out of bed, brush teeth and remind my mom to get up. I rush downstairs and boil water to make oatmeal.
• 12:45pm: Mom's still sitting on the bed and I tell her, we really need to get going. She then gets ready.
• 1pm: Breakfast is ready (2 figs, a bowl of oatmeal with milk mixed in, and an egg drink (stir an egg in a cup of boiling hot water and add honey...it's an Asian thing ;))
  1:05pm: She eats as much as she is able...finishes the egg drink, has a few spoonfuls of oatmeal, and eats the fig.
• 1:15pm: Off to chemo
• 1:45pm: @ the doctor's. We're reminded we're late and I apologize. Mom gets CBC (blood counts check). We learn that hemoglobin (hgb) and red cell count is very low...HGB is 7.6 ...normal is about 10 and up. Nurse checks with doctor who allows chemo, but we must make appointment to go to RWJ hospital to get two units of blood this week. 
• 2:15pm: Mom starts chemo and I make appointments. While mom gets chemo, I give her feet massage. Mom says I give the best foot massages but I think it's cuz only I do it. Then I read a magazine. Forgot my laptop at home.
• 4:15pm: Decide to go pick up Chinese takeout to bring home for after treatment dinner. Noodle soup and tomato pork chop.
• 5:15pm: Pick up mom and head home.
• 5:45pm: Mom tries the pork chop with rice and takes one bite and gags. "Onions," she says. I tell her to try the soup. She sits there for a very long time and then she says she wants to sleep. I tell her she can sleep after she takes a few bites of the noodles. She finally does and then heads upstairs. 
• In the meantime, I make papaya soup (see pic on right....thank you Chinese Soup Lady).
• 7pm: I check up on her, bring water and soup. She drinks the water and takes 2 sips of the broth. I feel her body is hot. I get the thermometer and her temperature is 103.4. Give Tylenol.

• 

  papaya white fungus soup w dried dates and almond

• 8pm: Get a call from grand aunt (grandfather's sister in Hong Kong) who talks to mom. Later she hands the phone over to me and talks about how worried she is for my mom and my family. She then starts crying and talks about how helpless she feels. Tells me to stay strong and do whatever I can to support her. She wonders why such things have happened to our family...(brief history: My grandfather deserted my grandma before my youngest uncle was born, then my father, her nephew passes away when I was 8 and my brother 10, and now my mom is dealing with cancer. Diagnosed at stage 4. Talk about unfair.).  After wiping my own tears and saying goodbye to aunt, I go upstairs and bring mom porridge. She takes a 2 spoonfuls.
• 12am: Since she hasn't eaten much, I make a drink...spoonful of protein powder, quarter cup of ensure, juice carrots and spinach and mix. I tell her she needs some nutrients in her system. She tells me she'll drink it later, but it's more like, I need to remind her.
• 1:30am: She calls me from downstairs and wants to try the porridge again. I heat up the porridge and the soup and bring it to her. I then feed her the both items (4 spoonfuls of porridge), and she finishes the papaya and the broth of the soup.
• 2am: try to finish up some work. Her temp is now 99.4 and hopefully will continue to go down.

She's so tired today and spend most of it in bed. I'm sure this is the carboplatin and cumulative effects of irinotecan. I just hope with all my heart these drugs are effective. My mom keeps saying she does not want to be sick. And I keep saying, I know.

The challenge of cooking

Pepper, ham, mushroom pizza that my mom didn't like but my friends did.

It used to be that my mom was the main cook at home, even while on treatment. She likes making her own food because she's very particular. But chemo has made her really tired and now she depends on me and my cooking. Unfortunately, that is not my strength. I can probably cook American food better than Chinese. An added challenge is that my mom's taste preferences change. One day, she'll like something and then another day, she won't like it anymore.

I tried making pizza. Trader Joe's sells pizza dough for $1.19 and I had the toppings already at home: ham, peppers, mushroom. My mom was impressed by the dish and tried it. However, she took one bite and spit it out. At first, I was upset, but then I reminded myself not to get mad. I then contacted a friend and asked if he wanted pizza, and thankfully the food didn't go to waste. I guess what's frustrating is that if my mom doesn't like the food, then I have to make another meal. Porridge, mash potatoes, soup, fish...etc. If she doesn't like it, she won't eat it. And I have to make something that she'll eat. It can be time consuming but it is what it is.

tomato, pear, and brie bruschetta with balsamic glaze

Today, I made tomato, pear, and brie bruschetta with balsamic glaze. I took 2 slices of bread, cut it in half and 3 slices across, and put it in the toaster oven. After toast the bread, I smeared brie over the bread, placed the tomato slice over the brie, and topped it with a thinly sliced pear. After, I dizzled balsamic glaze over the pear and tomato. Balsamic glaze is so easy to do, just added a spoonful of sugar and a dash of soy sauce to balsamic vinegar and heat in up in a saucepan until it gets syrupy. I used the recipe here.

And my mom ate 3 pieces! Go me!

My mom's been having pain recently. I absolutely hate it when she doesn't feel well. I have oxycodone on hand though it makes her very drowsy. I know she doesn't feel well, but I try to keep her eating here and there, some spoonfuls of mango, macaroni with tomato sauce, porridge, carrot juice, bruschetta... I know that whatever she doesn't like or eat, I could always bring it to work for lunch.

A lesson in anger management

It's so important to be patient as a caregiver but at the same time, it can be easier said than done. Sometimes I literally yell at my mom because she's not eating. Or other times, I'll snap at her, not because she did something wrong, but because of someone or something else that has been building up. I'm ashamed of myself when that happens, but it does. When that happens, my mom tells me she's going to call my brother. On the phone, she tells him, "Your sister is being mean and yelling at me." It makes me think of when my brother and I were kids, and I used to be the one calling my mom. How things have changed.

I think the lowest point was once, I was so angry that I even said I wanted to kill myself. Not because I was going to do it (and I would never), but because I just wanted her to feel how horrible it is to hear someone you love say that. I could never go to that point again. Really, there is no point in getting angry. Be mad at the disease but don't take it out on your loved one because you'll both end up feeling like shit.

Now, when I get angry for whatever reason, I just try to walk away. Even if it feels good to vent at that very moment, you'll feel horrible soon after.

The other day, I wasn't home and my mom said that she would take care of the meals herself. Well, I got home at 9pm and she had not eaten at all. I used to get frustrated and upset and mad, but now I realized, there's no point. No point in reminding her next time she needs to eat only to forget again. I quickly boiled water, made rice and prepared a few dishes. It's up to me to make sure she eats.

It's a wrap! (free head wrap for chemo patients)

A few days ago, my mom got a package from goodwishesscarves.org. It was a beautiful silk scarf as you can see from the pic above. The scarf has Swarovski Elements and retails at $72. The scarf also came with a personalized card with signatures and well wishes from their staff. I had applied a few months ago and was glad it arrived just in time for the increasingly warm weather. Despite the heat wave, my mom was still wearing a winter beanie around the house and outside. Since getting it in the mail, my mom has only been wearing this scarf. Sometimes it's little things..signs of compassion, like this that can really make someone's day.

Kudos to L. Erickson USA (franceluxe.com), the accessories company which sponsors this program. It is a really wonderful thing that they are doing to help individuals with cancer.

not my mom's scarf, but one of the many that's available

The mission of Good Wishes Scarves is simple:

to provide free of charge, one beautiful It's a Wrap© or Good Wishes Scarf to anyone experiencing the thinning or loss of hair as a result of illness or treatment. Our goal is to in some small way ease their journey, provide a small bit of comfort and share the power of positive thinking and good wishes with these individuals on their path to healing and recovery.

The application was really easy. Anyone losing their hair due to chemo or other treatments can apply here.

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.

O brother....

my mom and bro. his shirt says, "Go to the gym."

I have to admit, I often try to come up with witty titles for each post, and then I pat myself on the back for how clever I perceive myself to be. Anyway, I thought this post title was appropriate because it's about my brother taking care of my mom. For the month of June, he was on break from school (he's studying for his doctorate in physical therapy), and he stayed over from Sunday to Tuesday. Even though it was only two nights each week, his stay gave me a small break in my care giving duties. He brought my mom to her appointments including chemo, doctor visits, and blood work. He took her on walks and spent some good mother and son time. And mentally, it was a relief. I didn't have to worry about my mom being alone if I stepped out of the house. I could remind my brother to cook something instead of me doing it myself. Sometimes people ask me why my brother isn't more involved, but he tries to be as involved as he can. It's just the way things have turned out. He lives in the city which is about an hour away, and between balancing two jobs and school, it's a lot. But my brother does call almost everyday to check up on my mom. Sometimes I do wish I had a consistent partner in this because having my brother here was really helpful. At the same time, I also see how sharing care giving duties can lead to miscommunication, especially if one is much more knowledgeable than the other. For example, my mom has to get Neulasta, an injection that increases your white blood cells, the day after chemo. No if ands or buts about it. That's how the injection is taken. That same week, we decided to move up the scan and after it was done, I told my brother I had rescheduled her appointment another day to see the doctor. My brother unknowingly thought I was talking about the appointment for the injection when I only meant the doctor. As a result, the next day, my brother did not bring my mom to get Neulasta insisting to my mom that it was rescheduled. I then had to stress to him that the Neulasta injection can never be moved to another day. Thankfully, you can get the Neulasta up to 48 hours after your last chemo.

Outside my house where we often take walks

Thought I'd share some funny highlights about my brother's time w/ my mom:

My mom (who is the most un-pc person I know) telling me a conversation he had with my brother.

Mom: You know what your brother asked me when we took a walk?
Me: What did he ask you?
Mom: He asked me if I knew that you and your brother love and care about me very much.
Me: Oh really?
Mom: Yes. (pause for dramatic effect) Do you think your brother is retarded?
Me: haha. Is that what you said?
Mom: No. I said yes, but I was thinking, "Is my son retarded?"

My bro showed mom some exercises on the playground equipment.

 My brother and I taking my mom out for a walk/ exercise.

He points to a lamp post and tells me to go over there. With my mom standing next to my brother and me in the opposite direction, he then proceeds to instruct my mom to sprint to me as fast as possible. We are supposed to go back and forth like a relay race. As soon as my mom comes to me, I sprint to my brother who then sprints to my mom, who then sprints to me, and so on.

It's time to start and my mom looks at my brother as though he's delusional. But he's serious and he screams, "RUN!!" "FAST!!" "GO!!!" "RUN!!!!!" To my surprise, she starts moving. My mom begrudgingly waves her arms in a running motion and tries to get over to me as quickly as possible with an ever present scowl on her face. Kodak moment.