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.

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.

Don't tell the cops I drugged mom

Sometimes my mom's lack of appetite is so strong that nothing the doctors prescribe help in getting her to eat. We've given her Megace/ Megestrol, an appetite stimulant, but the effects weren't super obvious and I really didn't know if it kicked in. Well, I decided to try marijuana one weekend. I cooked it with butter, spread the weed butter on some corn muffins and offered it to her. It was a really funny scene...offering the muffin to her and waiting for any kind of reaction, seeing whether she'll get the munchies or act funny or extremely mellow. As a proud graduate of the fifth grade DARE program, I have never used weed in my life. In fact, the most common exposure I have had to marijuana is from movies like Pineapple Express and Super Bad. Never expected that at the ripe old age of 27, my encounter with weed would be in the context of cancer.

Medicinal marijuana was legalized in New Jersey two and a half years ago, but plans to allow dispensaries to set up shop have only been very recent. In fact, there are plans for a dispensary in Montclair to open in August. The other location is Egg Harbor Township. There have been many obstacles to making medicinal marijuana accessible.

First,

Gov. Chris Christie's administration held up its implementation while evaluating the law amid increasing pushback from federal authorities. Federal law bans the possession and sale of marijuana, and the Obama administration has taken a hardened stance against commercial enterprises growing medical pot.
New Jersey decided to proceed in July 2010, but the state Department of Health and Senior Services took time to develop a highly regulated system that it said was necessary to safeguard against theft and fraud.

(http://online.wsj.com/article/SB10001424052702304070304577398521324191292.html)

Then it was fear from communities with the "there goes the neighborhood" mentality, preventing dispensaries from opening in their towns. Their fear is unreasonable because of the regulations put in place.

Of all states with a medicinal marijuana program, New Jersey’s is among the most restricted and highly regulated.

The list of chronic ailments that qualify patients for a medicinal marijuana recommendation is short, and includes cancer, multiple sclerosis, muscular dystrophy, seizure disorders and Crohn’s disease. A recommendation can only be issued by a doctor who has registered with the state’s physician database.

Registered physicians must have an on-going relationship with patients before issuing recommendations, and must enter patients’ names, addresses, dates of birth and qualifying conditions into a secure online database.

As a part of the registration process, patients will also be required to submit a photo and obtain an identification card which lists the dispensary where they will procure their medicine.  (http://www.nj.com/cumberland/index.ssf/2012/04/nj_moving_forward_on_medicinal.html)

I'm glad that now it's finally happening and happening soon. It's opening in Montclair and Egg Harbor Township, two towns that can't be farther from where I live. Even if this law was not put in place, it just goes to show how super easy it is to get marijuana.

You know you're a caregiver when...

• You get excited when your loved one makes a bowel movement
• You feel enormous satisfaction when your loved one is eating and cleans the plate without throwing up
• The stuff that used to gross you out like vomit, poop, or blood doesn't phase you anymore
• TMI is no longer in your vocabulary
• You no longer define "Mets" as the name of a baseball team, and "Ned," no longer as Homer Simpson's neighbor
• You give an automatic eye roll whenever you overhear someone complaining about job, relationship, birthday stress...as the worse thing that's happened in their life
• You'd be rich if you got a quarter each time someone told you how strong you were
• social life? what social life?
• You know to warn the nurse that she only has 2 tries to get the needle in
• You spend countless hours perusing the internet for items to help deal/ combat side effects of treatment (wigs, protein shakes, supplements,etc.).
• You forget if you've showered today
• You constantly tell or show your loved one how much you love him or her
• Your nights out or "time for yourself" revolves around your loved one's doctor's appointments, scans, and if you can get someone to "babysit."
• You have the name of the disease on your Google alerts, so that if there are any novel treatments, you're the first to know
• Going to a caregiver support group is considered "treating yourself"
• You've become a pro at giving the best foot massages
• You've unleashed your cancer rage at the annoying telemarketer phone guy who apparently doesn't care that you're on the no call list
• Running errands helps you feel normal
• You've figured out how to silence the beeping machine, if only for a few minutes
• When you run into another caregiver, it's like you guys are speaking in tongues
• Your exhausted and tired, but you can't imagine anyone else doing this instead of you
• You know that before there was Brangelina or Bennifer or Speidi, there was EOX, Folfox, Folfiri, ECX, DCF...and other names smushed together to create chemo cocktails
• Their nap time is your nap time....
  You have the softest hands in town from all the lotions you applied..
• You know that "5FU" is not a dirty word
• You feel like smacking the next person who says "Boy, you really look tired" (but you have no energy to even if you could).
  You make life and death decisions with a snap of your fingers but you need 30 minutes to select an item from a dinner menu.
  You can rattle of the generic and brand names of medications and the family they belong to quicker than the nurse.
  Going to the grocery store feels like a mini-vacation.
  
  
  *from caregiver board on csn.cancer.org)

As a caregiver, people always stress that it's important to take care of yourself even though it's not always easy. Here's a "Self-Care Inventory" Check List. I have yet to rate myself, but it can be helpful in evaluating your strengths while looking at making positive changes in the lower scored areas.