Some People Just Don't Understand

Throughout this whole experience, I've learned something very important: who I can count on for real support and who I can't.

When my mom was first diagnosed, I reached out to my friends for support. And I was hugely disappointed. Most of them had just gone off to college. They were focused on their own lives. And while they said stuff like "I'm sorry," and "That sucks," and "You can always talk to me," I never once felt like they were actually understanding what I was saying and how I was hurting.

It pissed me off that they didn't seem to care. I became very bitter. When I moved home right after the diagnosis, all my friends who were still there wanted to do was hang out and act like nothing was wrong.

I became very depressed. I was hurting and all I really wanted was to go crying to my mom for support. But I couldn't. I didn't want to burden her with my worries. She had enough on her plate to deal with.

Luckily I met someone at the community college I was going to who turned out to be my biggest support throughout this whole thing. (He's now my boyfriend.) And while it felt so good to finally have someone who actually cared about what I was/am going through, it's still frustrating that my friends just don't get it.

I'm not longer pissed off and bitter, I've learned dot accept it, but it's still frustrating.

My friend/roommate while I was studying at DePaul in Chicago also had to move back home to New Hampshire after one year because financial problems. And I periodically get texts from her (about once a week)  saying stuff like "i miss you. you should come to new hampshire." and "wanna go back to chicago with me? we could get an apartment together and pretend we didn't miss a year of each other's lives." Texts like these really irritate me. Thank you for reminding me of all the fun that we used to have in Chicago that I had to leave because my mom got terminally ill. Not helpful.

Also not helpful is that she thinks I can just hop on a plane and spend a week in New Hampshire with her. Why would I possibly be able to do that? I wouldn't be able to be so far away from my mom for so long without being constantly worried that she might have a seizure or something. And my friend just doesn't get it. She just gets gloomy and shit.

I don't know what to say to her anymore. She obviously just doesn't understand what I'm going through at all. I don't blame her. But I don't want to be constantly reminded of the fun and carefree college life I got to experience for only a hot second.

Yesterday I got a Facebook message from an acquaintance I haven't spoken to in about a year. I remember when we first met at a music rehearsal for mostly high school students. He asked me why I was there (because I was the only college student). I told him about my mom and how I had just moved back home, and he told me that his dad was a recent cancer survivor and his mom is battling breast cancer. And on top of everything, he'd decided to spend the year after high school travelling the world.  That really blew my mind. I couldn't believe that I had given everything up in Chicago to be with my mom, while this guy had chose not to give up anything. I hadn't even thought that continuing my life in Chicago was even really an option.

Anyway, I got a Facebook message from this guy yesterday and I really appreciated it:

Hey Misha, I wanted you to know that I wish you and your family all the love and strength in the world! I have so respect for what you're doing to support your mom. Although my mom's cancer is if of a different variety, I've often felt like I've been calling upon an empty universe, that no matter how much I shout out, very few people seem to care enough to do something about it. I just wanted to let you know that I care and send you the best of luck.

Sending lots of good vibes your way.

P.S. - Best of luck with the Brain Tumor Walk this year!

I think his message really says it all. Being of high school/college age, it really does feel like there's no one sometimes. No ones my age understands. Everyone's worried about trivial shit that doesn't seem important at all. Everyone just acts like everything's fine, which may be helpful for some people, but for me it's not helpful at all. I just want someone in my own age group to notice that I'm struggling and to care. 

This experience has made me turn to new people to find support. It's definitely been a learning experience and I'm actully kind of grateful.

Avastin Is Fucking Incredible

If you haven't heard the news, my mom had an MRI on Monday, and the results were very positive!

The Avastin has been working and the tumors are shrinking! I don't think I've ever sobbed uncontrollably out of pure happiness before. But I just couldn't help it. The tears of joy just started pouring out of me. After 2 craniotomies and several failed clinical trials, I had lost almost all of my hope for my mom. I had read about the signs of GBM progression and what the patient looks like when death is nearing. And I know my mom was heading down that path, and rather quickly.

But then she started the Avastin and things started changing. (You can read about it in my previous post "I Don't Know Who To Thank")

It's not that everything's better again. Her cognitive abilities are still that of a 4 year old. And she still has no filter on what she says. She tends to say things that would never be appropriate for a mother to tell her own daughter. I won't go into details, but let’s just say I've learned a lot about my mom's past ever since the cancer diagnosis.

But she's doing better physically. It's not a big change, but she can walk again now (with her walker of course). Which is good because that wheelchair as very difficult for everybody.

So the moral of this story is that I'm insanely thrilled that my mom's tumors are smaller, but I also know that it can take a turn for the worse at any time really. Especially if her platelets are too low for an Avastin infusion (which was the reason we didn’t start Avastin earlier). I hope to god that doesn't happen again. That one week without the Avastin was the week she was at her worst. I don't want to see her like that ever ever again.

The other moral of the story is that Avastin is fucking incredible!

I Don't Know Who To Thank

I've never been religious or believed in God, but at this moment, I don't know who else to thank.


Two weeks ago, my mom sent me this text after I got my haircut:

"Youe hircu rlooks besuirul mish, you shoul dbe pou!"

It made me cry. To see my mom's typing abilty deterioarate to that was just so hard to take. Her brain is obviously failing. I can't believe it.


And then last week her movement started deteriorating faster too. Walking became almost impossible. She started using a wheelchair.


I began preparing myself for the worst. It didn't seem like she would make it another 6 weeks.


But then yesterday I received a text from my mom and she her spelling and punctuation was SO much better:

"I love you& miss youn to. Loet me know when I can see youagain ."

It made me so happy. So incredibly happy! I starting to believe that the Avastin that my mom started a couple of weeks ago might actually be working! After 3 surgeries and 5 different clinical trials, I had certainly lost all hope that anything could slow this cancer down. I'm pretty sure those tumors have superhuman strenght or something because they aren't phased by anything!

Except for maybe the Avastin.

And then this morning, I received a text from my sister that said, "Mommy's walking without the wheelchair! And she's walking really well with the walker!"

Well, I started crying again. And out of no where I said, "Thank you God." I really just can't think of anyone else to thank. I feel so amazingly grateful. I know the improvements may not last long and that it can take a turn for the worse at any time, but after 16 months of no improvements and loss of all hope, it feels incredible to know that my mom doesn't need her wheelchair. Even if it's just for today. Today, my mom doesn't need her wheelchair.

And I just want to tell the whole world!

Today, my mom doesn't need her wheelchair!

Maybe We Can Learn From Benjamin Button

Now I've never seen or read The Curious Case of Benjamin Button, but what my mom's going through reminds me of that story. From what I've heard, Benjamin Button grows younger instead of older. He begins as an old man and dies as an infant. I believe he mentally becomes younger throughout his life too.

This is exactly like my mom, but sped up. In the past 16 months, my mom has lost about  40 years of mental capacity. Her tumor(s) are located in her frontal lobe, the part of the brain that doesn't finish developing until you're about 24. So with her frontal lobe deteriorating, she is essentially becoming a child mentally.

But unlike Benjamin Button who degressed at the same speed a normal person progresses, my mom has lost 40 years in 16 months. It's heart-breaking to watch.

At first, after the first surgery, everything seemed totally fine. But then her memory starting slipping. Then her ability to plan things. Then her decion-making. Then she lost her filter. she says whatever's on her mind, if she has the enerygy to speak at all. She's certainly swearing a lot more. Very different from the mom I grew up with. Though she still freaks out if I even say "shit". So something still don't change. Haha.

It's a very odd sight. I've found myself treating her as if she were a 4 year told. I say things like "Oh no honey. We can't eat that. It fell on the ground." or "Do you want to go potty? Let me help you." But the part that's weirdest to me is her face. I say things like that and she just looks at me with her big eyes filled with curiosity, biting her lower lip like a baby (see earlier post). She has the facial expression of a 4 year old. It's miraculous how frontal lobe development affects facial expression.

I'm not sure how my mom is going to eventually die, but maybe thinking about it in terms of Benjamin Button might help. Maybe she's just growing younger. And when she gets as young as a newborn, it'll just be her time to go.

The Fall and The Irony

Today, I was walking back to my car after class and I saw an older Indian woman getting out of a car in the parking lot. I thought to myself, "Why can this older woman get out of a car with ease, while my mom, who barely 52 years old, can't even get even get out of bed by herself."

And just as I thought that, the older Indian woman fell down. She dropped her belongings and lost her shoes. She landed on her hands and knees.

I was shocked. I did not expect that to happen at all. Stupidly, in my shock, I just stood there while the woman's daughter and a stranger helped get her back on her feet. I wish I had helped.

The whole incident was very ironic. But it got me thinking. Why are our bodies built to essentially deteriorate as we get older? I wish no one had to go through that. But I find that almost everyone does. And it's not even that I'm scared myself to go through such a thing. I'm scared for everybody. It's an awful thing to watch someone go through it. And I'm sure it's even more awful to go through it yourself.

Time to Register for Next Semester's Classes

April 12th is the day that registration opens for returning students at my college. It’s the day I’m supposed to register for classes for Fall semester. I’m usually really excited about registering for classes. I like looking through all my class options and figuring out my schedule. 

But this time, my excitement is dampened by my mom’s health.

I’m no expert, but I have a feeling she won’t make it another year. It’s scary for me to think that I’m going to be registering for my Fall semester classes, and I’m not sure if my mom will be alive when I finish those classes.

So that leads me to think that maybe I should take the semester off. Maybe I should take a leave of absence. 

I’m currently a full-time student at Mills College in Oakland. I wanted to only be part-time so I could have more time with my mom. But the financial aid office told me that they don’t offer financial aid for part-time students. I asked them if they could make an exception, and the man just told me that he suggested that I take a leave of absence when things get really bad. 

I hated that answer. I know my mom wouldn’t want me to put my education on hold just for her. And I certainly don’t want to either. I know that statistically, people who take a break from college rarely actually return to finish their degree. 

But as my mom gets weaker and weaker, I hate being at school. I do not give a shit about what style of counterpoint northern Italian composers used in the late Renaissance. Or how to find the elasticity of demand in a perfectively competitive market.

So I’ve been contemplating taking a leave of absence next semester. Mostly because I cannot possibly imagine being in school when she dies. I don’t think I could handle that. I know that I shouldn’t expect her to die, but I just want to be prepared.

But there’s one thing I found out today that is telling me to stay in school. I have Federal student loans, and if I go below part-time student status, then I have to begin payments on those loans. And there is no way I can afford that right now.

I’m also thinking that it might be best for me to move back to my parents’ house sometime soon. My mom’s last MRI did not go well. In addition to her original tumor, 3 more have grown. And one of them is pushing against her Hypothalamus. She’s now doing Avastin and her next MRI is on April 16^th. So we’ll see how she’s doing then. But I feel like it’s very unlikely that things will be getting any better. I just hope things don’t get worse. 

With school right now, and my mom’s surprisingly busy schedule, I see her twice a week if I’m lucky. I feel like I should be there more, which is why I’m thinking of moving back. But like I wrote about earlier, I don’t even have a bed there anymore. So even if I did want to move back, I’m not sure where I would sleep. 

Sorry to make this post such a downer. I know I’ve been quite a downer lately (just ask my boyfriend). But I have so much on my mind all the time. The idea of taking a leave of absence from school and moving back home seems like it would relieve a lot of stress for me. Then again, it would also probably add some new stress too.

So I’m not sure what I’m going to do. I feel like moving back, whether or not I take a leave of absence, is probably a good idea. I’m just not sure when. At what point do I move back home? I don’t know.