My Parent Has/d Cancer

So writing the last blogpost on empathy got me thinking.

I started this blog with the hopes of somehow creating a community for people like me. People who are teenagers/young adults and have a parent with cancer. (I wrote about my initial objective when I started this blog.)

I was so unimpressed with the resources for young adults with a parent who has cancer. (You can see how little information exists on this topic by visiting the National Brain Tumor Society's resource page.)

It's such a difficult thing to deal with, especially at time when you're supposed to be focused on you. On figuring who you are and what you want to do with your life.

I want to create a community of support for teenagers/young adults dealing with this.

I've seen how brilliantly effective the hashtag #btsm (Brain Tumor Social Media) has been on Twitter.

So I've come up with the idea of the hashtag #MPHC (My Parent Has/d Cancer).

Just as #btsm has become a place for people to connect and find support, I dream of #MPHC to become a place for people dealing with a parent who has cancer to find a community of support and, most importantly, of empathy.

We All Need Some Empathy

My friend's mom (the one who was staying at my parent's house) talked to me the other day when I was at the hospital. It was the strangest thing. She actually wanted to know how I was doing. she wanted to know what was going on in my life and I was coping with everything.

It felt so weird, because no one in my family has really done that. I feel so forgotten about most of the time. I mean, not exactly forgotten about. I mean my parents still remember me. But they don't ask how I'm doing. They don't take into consideration how hard this has been on me at all. To my family, I am only here to do things for them.

It's partially why I moved in the first place. I felt like my feelings were being totally ignored.

I mean, I dropped out of a theater conservatory in Chicago to move back home to be with my mom. And no one thought anything of it.

So talking to my friend's mom felt very strange, but actually very nice too. One thing she told me was, "Your dad knows how to do two things: take care of your mom, and get angry. That's it." And it's true. My dad has almost totally forgotten how to be a dad.

And I've watched my mom try to desperately to hold on to her motherhood. She tries to discipline my sister (who's a freshman in high school). But my sister being my sister, of course she breaks the rules, she always has. But now it's harder on my mom. She actually decided the only control she really has over disciplining my sister now is to prohibit my sister from visiting her. We quickly told her that was an absolutely terrible idea. Because it would be punishing my mom just as much as it would be punishing my sister.

But it's so hard to watch and experience. My sister and I essentially don't have parents anymore. They just want me to always be at their beck and call, without any consideration to my life. And it seems they really don't care what my sister is doing with her life one bit. As my friend's mom said to me, "Your parents have always let your sister get away with anything. She has very little expectations placed on her. But they have plenty of expectations of you."


All they see is the negative, especially with my sister. You now, she's actually started doing better in school since our mom got sick. And my parents don't seem to care at all. I keep having to remind my mom that my sister is a good kid. She doesn't seem to think so.

My parents have always been the kind of parents that are difficult to please. But now they have become people that are absolutely impossible to please. I feel like I'm just constantly disappointing them.

The other day I told my mom that I love her. And her response? "Do you love me enough to dump your boyfriend?" I honestly didn't know what to say to that. What I wanted to tell her was, "I'm not going to break up with him because he's the only person who pays attention to me and thinks about what's best for me."

I know I can blame my mom's lack of ability to empathize on the cancer, but the honest truth is it's not the cancer's fault. She's always been like this. She has never been able to easily empathize with people. I mean, she always tired, but it was always obvious that it was difficult for her. (After taking my psychology class this semester, I've come to the conclusion that my mom has always had some narcissistic tendencies.)

And now with the cancer, I'm actually surprised how much of her personality has stayed intact, especially since the tumor originated in the frontal lobe. The major difference I've noticed is that she has absolutely no filter anymore. She will tell you exactly what she's thinking, even if it's horribly inappropriate.

But it's not just my mom that can't feel empathy for others. My dad has no ability to empathize either. He gets so unbelievably frustrated with my mom when she can't do simple tasks. Like if he asks her a question and she doesn't respond immediately, he'll ask it three more times. Or if he tells her to move her left leg and she can't do it. I can't believe that he would be mad at her over such things, but her does. He gets frustrated and scolds her. It's so difficult to watch.

My mom's actually told me a few times that she scared of my mom. Now I know from personal experience that he can be quite intimating when he's mad. But to hear my mom say that she's scared of my dad is just heart-breaking. Shes in enough physical pain. She should have to deal with that too.

The other day at the hospital, my dad got frustrated because he asked her a questions while she was eating and she just kept on eating. He stormed out of the room. I gave her a kiss and told her she didn't do anything wrong and that I knew she was doing the best she can. She teared up and said, "That means a lot to me."

That might be the most difficult thing to watch out of everything. She's trying to hard, and my dad just gets frustrated with her. And it hurts her so much.

Huh. Ironic, that's the way I feel about my dad too. Goodness, that man is impossible to please!

Dear Mother's Day

Dear Mother's Day,

I think you are a stupid holiday.

My mom has cancer. She's dying. Not a day goes by where I don't think about her: how much I'm worried about her, how much I love her, how terrified I am about what it's going to be like when she's gone.

But even if we miraculously find a cure for her cancer and physically she gets better, things still won't be okay. Even if she can get the strength to walk again. Even if her balance improves so she can walk without toppling over. Even if she can finally stop taking those medications that make her gain so much of weight. Things still won't be okay.

I don't think there's a miracle powerful enough in the world that could reverse what the cancer has done to her brain.

It's in her frontal lobe, the part of the brain that controls personality, decision-making, and cognition. So you can imagine what's the cancer done to her. Well, maybe you can't. You see, Mother's Day, most of the time it seems like she has the cognition level of a 5 year old. You know the part of the brain that developes as you get older and smarter and wiser? Well, that's the part of the brain she's losing. Parts of it are just gone.

It takes her several seconds to conprehend what you've said to her and then develope a response. A lot of the time she will repeat the exact thing you said to her, and you can't watch it in her eyes. You can watch the exact moment that she understands what you said to her.

She also cannot not seem to follow directions very well. I don't know if this is a personality issue where she's become defiant. Or if she can't comprehend the directions. She seems to just want to do things her way. She also throws fits when she doesn't get her way. When she could walk, we would take her to the grocery store, and if she didn't get her ice cream, she would throw a fucking fit like she was 2 years old.

So Mother's Day, even if we could find a drug of treatment that could cure her physically, this cancer has destroy her so much neurologically, that I don't think she'd ever be able to fully recover. The mom that raised me is gone is mentally gone. And I've watched her slip away.

So Mother's Day, fuck you.

I just want my mom back.


PS - Oh and tell Cancer, fuck him too.

What Really Hurts Me The Most

My family and me at my high school graduation in 2010 - six months before the diagnosis.

Like most people, I didn't grow up in the best of families. Not to say it was a terrible experience, bust not wonderful, you know?

It's me, my mom, my dad, and my younger sister. And the only other person I've ever been close to is my mom. My sister and I have just fought constantly our entire lives. And my dad, well he's the quintessential emotionally distant dad.

My mom's the only person I really felt comfortable talking to about important stuff, or at all really. Having an actual conversation with either my dad or my sister has always been difficult.

But then the cancer diagnosis happened, and you'd think it would have brought us together. But in fact, the exact opposite happened. The exact opposite.

This cancer has torn my family apart. Partly because of the stress it has caused everyone. My dad has told me he doesn't have the energy to really pay attention to my sister anymore. Which makes me particularly worried because she's just started high school and we all know what happens to girls in high school who have parents who don't pay attention to them.

My sister has drawn away. She plays three sports and is constantly not home. Either at a practice, or game, or tournament, or at a friend's house doing god knows what.

And on top of everything, my mom really was the glue that was holding our family together. She worked so incredibly hard to keep our family together over the years. I mean she constantly begged for my sister and I to get along. So much so that it even brought her to tears a few times to see us fighting. I wish so much I hadn't caused her that pain. And while my sister and I get along decently know, we barely even talk or see each other. Maybe one a week at most.

When I was little, my dad was never home. He was always working. By the time I started middle school, my mom had convinced him to spend more time getting involved with my sister and I. And he did.

My parents are also the kind of couple who probably shouldn't have gotten married. They never fought in front of me or anything, but they just didn't seem to get along. They're just two very different people. And I know my mom has worked very hard throughout their relationship to make things work better.

She really has worked her ass off to create a stable family environment (even though she's told me on several occasions that she never really wanted to be the mom type). I'm really proud of her. And I hate it so much that this cancer has essentially destroyed everything she has worked for. Everything is falling apart without her. I honestly don't know what's going to happen to my family when my mom's gone. She has always been the glue.

I remember when I first flew home from Chicago. All I knew at that point was that they had found a tumor, but I didn't know if it was malignant or not. I got to the hospital, and after spending some time with my mom, my dad took my sister and I outside. He told us that the tumor was malignant. It was cancerous. He told me that the 3-year survival rate was only 5%. That would probably only have 1 to 2 years left with our mom.

After the initial crying spell, I looked up and thought, "This is going to be my new family in a few years. It's just going to be the three of us."

I hate it so much that things have just gotten worse with my family has my mom's health has gotten worse.

But what I hate most, is that my mom has to watch our family fall apart. She will die knowing that our family is in shambles without her. That's what really hurts me the most.

Facebook Page

I decided to make a Facebook Page for this blog. So now you can all keep up with me and my mom via Facebook!

https://www.facebook.com/ComingHomeToCancer

And if you don't already follow me on Twitter, you can go ahead and do that!

https://twitter.com/#!/CHTCancer


FYI: my mom goes into the hospital on Friday for her shunt operation. Looks like she'll be in the hospital for Mother's Day :(

Happy Memories

Someone suggested to my mom that she start a Happy Memories Journal.

We started two weeks ago week, and since then my mom's motto has been "Think about the happy memories."

It's amazing to see her face light up when she talks about all the embarrassing things I did as a baby (though I turn bright red). She gets excited with all the happiness that instantly comes back to her. She says, "It's amazing how one happy memory just leads to another happy memory and then another."

And she's absolutely right. Every time I visit her now, we sit and chat, and I just write a list of all the stories she's telling. It's really nice. People have been telling me throughout this whole experience to make my time with my mom count, and I never knew how. Every time I left my parents' house, I always felt like my visit wasn't memorable, that I hadn't spent quality time with my mom. I was always leaving their house worried that I would just feel guilty after she died.

But since we've started the Happy Memories journal, I always leave feeling really satisfied. I don't feel guilty anymore. I feel like I'm doing something right. I feel like this journal is going to help all of us to enjoy our time together (instead of just sitting in front of the TV awkwardly like we normally do). And it will give us something in writing to keep after my mom is gone. And I think that is very important.

I've also decided to start my own Happy Memories Journal of times I've spent with my mom, both before and after the diagnosis. And I'd have to say, it's probably one of the best decision I've ever made. At first I tried to sit down and just write about happy memories. But I've found that it's easier for me to just go about my daily life, and when something reminds me of a memory with my mom, I go to my journal and write it down.

Some of the pages (especially the ones about times before the diagnosis) are stained with tears. But it's just a reminder of how much I really love my mom.

So to everyone reading this: I highly suggest starting your own Happy Memories Journal. I promise it's really very easy. And it will make you feel so good!