Sometimes, It's the Little Things

Is it too soon for a new post? Eh, I hope not, because I have stuff to tell you!

Sometimes, it seems like talking about my diagnosis here involves talking so much about the mundane and the unpleasant parts. There are very few exciting or good parts about having brain cancer, and even though I spend a lot of time putting on the strong face, a lot of the time, that strong face is just a mask to get me through the day.

Yesterday, however, was a good day. The strong face was real, the smiles were genuine, and the laughter was contagious. The Husband made me laugh, the blood work came back all good, and the radiation therapists were jammin' to my Linkin Park playlist. It was a really good day.

And then.

The Husband asked if I wanted to see the sunflowers.

Do I want to see the sunflowers? YES.

I was already feeling a little tired from the radiation, and the radiation headache was just getting started, but I also love sunflowers. It was already a good day, and I thought to myself, "Self, there's only one way to make a good day even better."

Look at this beauty.

So we went to see the sunflowers. Rows upon rows of my absolute favorite flower, all buzzing with bumblebees all up in that pollen? Nectar? Whatever it is that bumblebees do, they were doing a lot of it!

All up in that bumblebee/sunflower love!

Now, generally, I don't tend to like flowers that much. There's nothing wrong with them, but I feel pretty indifferent about most flowers.

But sunflowers. They are so tall. So cheerful. They make me so happy.

Something as simple as taking an extra twenty minutes to drive to the sunflower field made such a difference. The Husband did not have to take me to see the sunflowers. In fact, I didn't even know about them, so The Husband didn't even have to mention that there were sunflower fields nearby. But The Husband is a good husband, and he knows how to make me smile.

Would I be happy if we won the lottery and were independently wealthy? Yes.

Would I be thrilled if healthcare were free? Well, obviously, because cancer is expensive!

Would I pass out from excitement if I suddenly got tickets to Hamilton with a chance to meet Lin-Manuel Miranda? Absolutely.

OMG.

But these things don't happen to people like me. And honestly, with something as crappy as brain cancer, I have to take the those small wins where I can. Getting to spend twenty minutes talking to the sunflowers and the bumblebees was a great way to end the day. It has been a long time since I had a day as good as yesterday. All thanks to The Husband and a bunch of sunflowers.

I love this guy!

Radiation: Starting week 3 and Talking about Hair Again

This week I start week 3 of radiation, so I thought it was time to show you a little more of what that looks like. Keep in mind, radiation takes maybe 15 minutes, not very long at all. I spend more time on the car ride there than I do in the room.

Here, you can see something similar to the machine they are using on me. I don't know all of the specifics, but it beams radiation to a very specific part of my brain using a combination of MRIs, CT scans, and X-rays to get a very detailed map of my brain. It is all very high-tech and fancy-looking.

Radiation machine

Now, because the beam of radiation has to go to such a specific part of my brain, they have to be sure that they have me in the exact same position every single time no matter what. So what you see below is similar to the mask that I have to get into, which was custom-made to my face to help with the mapping of my brain. It's a little difficult to see in this image, but that mask is held down with 3-4 toggles on each side. My specific mask has 6 points of contact where I am essentially stapled down to the table while the machine above does the humming radiation thing.

Radiation mask

So, for the fifteen or so minutes that I am basically stapled to the table, I get to listen to my music (individually curated playlists every day) and wait for the machine to do the thing. It is really not the most interesting thing in the world, although I do get a little anxiety getting into that mask every day (because I'm being restrained by my face). About an hour after the radiation treatment is done, I get the headache (common), my ears plug up (also common), and I get tired. Usually, I'm able to sleep for a couple of hours once The Husband gets me back home.

The other thing about radiation (which I've mentioned before) is that it does make your hair fall out, particularly in the specific areas that are being radiated. So this is what my head looks like on the non-radiation side:

Not terrible, right?

And this is what it looks like on the radiation side:

Yikes.

I won't lie: when the hair started falling out, I felt some distress that I didn't expect. I thought that I wasn't vain enough to care. I thought that shaving my head meant that I wouldn't notice it falling out in the first place. I thought it wouldn't matter.

What I didn't expect was that having the hair fall out on one side of my head would be a reminder. A reminder of my diagnosis.

Many days, I try to do something, anything, to make myself forget, at least for a while, that I have cancer. Some days, there is absolutely nothing I can do, because all day long, all I can think about is cancer, having cancer, being the cancer lady, cancer cancer cancer.

On the day I noticed my hair was falling out, but only on that side, it had been a day in which I had successfully had peace from the nightmare word that circles around my head all day. It had been a good day.

And then it wasn't. I remembered that I have brain cancer.

So yeah, starting week three of radiation is not necessarily fun, but now you can see a little more of what I go through for fifteen minutes a day. Is that more or less scary than you thought it was? Sometimes, I can't decide.

If you'd like to help, here are a few things that you might be able to do:
GoFundMe 
If you can't donate, please share this across any social media platforms. Thank you so much for your help and support!

My Amazon Wish List: These are comfort items, things that I think will help make me more comfortable over the next several weeks that I will be home. I've added several more hats to this list.

 My CashApp: I hate to even ask, but if you are willing and able to donate any amount at all, it would help me pay for gas, groceries, and other necessities, especially while I am not working.

Read with Me: The Power by Naomi Alderman

If you would like to read with me, check out the info below:

The Power

It is almost time to start reading!

I don't want to run this like a traditional book club, because that requires everyone to be on pretty close to the same pace, and I know that my pace has definitely slowed down (2 brain surgeries!).

So, instead, I found a site with discussion questions to think about as we read. No deadline, no "read chapter 1 by Monday" or anything like that. Read with me, ahead of me, or along with me, and think about those discussion questions. Post comments here if you have thoughts, questions, or want to ask me or anyone else for clarification.

Have fun!

Sometimes cancer is REALLY boring

I've got such great friends and family who ask after me, looking for updates and wondering how I'm doing, and sometimes it is really hard to answer because cancer is really boring.

I sleep a lot. I take my chemo every day. I have to make myself eat most days because chemo burps are terrible for the appetite. Every afternoon The Husband drives me to radiation. We try to figure out what to do for dinner (difficult because of aforementioned chemo burps). That's basically kind of it.

I am trying to add some structure to my life. Hopefully, soon, some people will be reading with me. I have the book and am hoping to start it this weekend?  

I tell people that my condition is currently boring, and I don't think they understand. Yes, I have chemo every day. Because the cancer is in my brain, it's not chemo like most people imagine. I'm not hooked up to an IV infusion. I don't have a port. My chemo takes almost no time out of my day because it is one (very nasty) pill. Seriously, I take a pill every day. That's my chemo. That's literally it.

Some days, the chemo makes me feel nauseated, but mostly it makes me burp and tastes really bad.

I know, not the most lady-like, but what can I say? That really is the most exciting part about the chemo. It's not even making my hair fall out. That's what the radiation is for.

Five days a week, I have a crazy-looking machine aimed at my head for 15 minutes. I don't see a laser, I don't glow in the dark, and I haven't gotten any superpowers. I don't feel it, but the machine is a little noisy. It makes a weird hum/whine that just doesn't sound right, but at this point, I'm mostly used to it. The most exciting part is that, since I can listen to music while I'm in there, I make a different playlist every day, depending on my mood.

That's it. It takes more time to drive to radiation than to be in radiation.

I know that sometimes people get concerned because I haven't updated lately, but seriously, there just isn't much to update. I sleep mostly. I eat. I get my treatment. I don't get quite enough exercise. I sleep some more.

Pretty boring, right?

First day of school!

Typically, on a day like today, I would be meeting anywhere from 30 to 80 new students on this the first day of school. The students don't seem to notice it, but usually I am as nervous for the first day as they are. I would talk about my classroom policies. I would show them their textbooks and explain how to get them. I would let them introduce themselves to each other, and to me. I would hide the first day of school jitters, and get right into the swing of things. By the end of the day, I probably would have forgotten most of the names of my new students, but I would work hard to get those names to stick in my head.

Today, I had no students to meet. No classes to teach. No textbooks to show, and no introductions to make.

Today, I ate, I napped, I cooked. I did my treatment, and then I napped some more. Today, more than any other day, I felt my diagnosis and it hurt me. I love to teach, and it is so hard to deal with losing my identity as an English Instructor, even if just for now. I miss the students that I won't get to meet. The awkward ones who will take weeks to open up to me, and the extroverted ones who will want to be BFFs right away. The high school dual enrollment students who don't quite know how to be college students, the freshman students who don't want to let go of high school, and the grown students who just want to get through this even as they work, raise their kids, pay their mortgage, get a divorce.

This is one of the hardest parts of my diagnosis. I've become so accustomed to having my life structured around the semester schedule. To paying attention to which classes are taught on which days. To studying up, because the craziest part of teaching is preparing yourself for the off-the-wall questions and oddball non sequiturs that students inevitably come up with. To planning my office hours and squeezing in the grading, reading, and advising. To updating PowerPoints, coming up with collaborative projects and thinking of other active learning activities.

Instead, I am finding other ways to structure my days. It's not the same as the structure of teaching, but for now, it will have to do.

To all of my co-workers and colleagues, I hope this first day of school went as smoothly and with the least amount of chaos as possible.

Happy first day of school!

A short update, and introducing: Read with me? The Power

Yesterday, I had a hard day. Yesterday, I was not more than my diagnosis. Yesterday, I could not escape the word cancer hovering over my head, so I slept, then I cried, then I slept some more, then I cried some more. Then I took some valium, because sometimes the best you can do is get some chemical help.

Today, I am more than my diagnosis. So I've decided what book to read next. If you would like to read with me, check out the info below:

The Power

This book was on my wish list, and a very dear friend sent it to me, so this is the one I am reading next. I will probably wait about a week to start reading it, so if you would like to read with me, let me know, and I will wait until a good few of us have copies ready and are ready to start.

In the meantime, I need to finish eating breakfast and take my morning meds, because I have a friend coming over soon. Sometimes, it's all about keeping busy!

Ending and Beginning

The Ending
I finished a book yesterday. First time I've finished a book in two months. Yeah, I know, I've been busy with brain surgeries and other things keeping me busy, but I still want to tell you about this book: Nation by Terry Pratchett. The blurb on the back of the book:

"When a giant wave destroys his village, Mau is the only one left. Daphne—a traveler from the other side of the globe—is the sole survivor of a shipwreck. Separated by language and customs, the two are united by catastrophe. Slowly, they are joined by other refugees. And as they struggle to protect the small band, Mau and Daphne defy ancestral spirits, challenge death himself, and uncover a long-hidden secret that literally turns the world upside down."

Full disclosure: This was a re-read. So I knew what it was about, and kind of remembered what happened in the end. I have to say, though, that I was a little disappointed in myself because it took me almost two months to finish reading this book. In the end, it was a good book for me to read. The protagonist has a very bad thing happen to him, and the rest of the book was about him figuring out how to cope with this very bad thing that happened to him.

Admittedly, I can't say that I've been through the same bad thing as this character; however, going through his process helped me to go through my own coping process. In the novel, the character Daphne says,

"People need time to deal with the now before it runs away and becomes the then. And what they need most of all is nothing much happening" (Pratchett 134). 

This just spoke to me, because at some point I feel like I was trying to rush myself through the process of coping with my diagnosis. So many people have been telling me how strong I've been, and I rarely feel like I'm being strong. Maybe with more time, I will actually feel like I'm being strong, but for now, I really just feel like I haven't had enough time to process. Luckily, I have time to keep on processing this.

Some of you may have noticed that my sense of humor has remained as inappropriate and immature as ever. I crack jokes about the hole in my head, and I have shown plenty of people my brainhole (I'll tell you more about that later). Earlier in the novel, Mau says that

"sometimes you laugh because you’ve got no more room for crying... [and] sometimes you laugh because you’re alive" (Pratchett 86). 

My rule about no crying or making sad noises comes down to exactly this. I have plenty of room for sadness and grief in my life. I don't have room in my heart for anyone else's grief. What I need is for the people in my life to share joy, silliness, and laughter, even (especially) when it is difficult to get past the C-word. I have plenty of  my own tears somewhere in here, but I have no room for crying right now. I have to be strong, and I have to be positive.

This book was excellent. It was exactly what I didn't know I needed. Read this book.

The Beginning

Tomorrow, I start chemo and radiation again. I won't lie: I'm a little worried. I got through two days of chemo and radiation and it suuuuuuuucked. I am not excited about going back into that, but the thing is, there are very few things about having cancer to be excited about. So, instead of thinking about that, I'll tell you that I'm excited to read my next book. What book shall I read next?

GoFundMe Link, and don't be Dr. Google

The Husband has put together a GoFundMe for us. Right now, we aren't quite at risk of being homeless, but medical bills are mounting quickly, and I am still not working.

So, before I post the link to the GoFundMe, we need to talk.

We need to talk.

Most of you have gotten a certain version of my story. You may feel upset, betrayed, or disturbed by the version of the story that I have shared. I want you to know that while I have been truthful with you, some portions of the truth have been omitted.

This is not because I have been sitting here thinking about ways to keep my story from you, my dear friends and family. This is because on June 27th, I received my diagnosis. The trauma of receiving this diagnosis led to me screaming, actually screaming, and crying, for the entire rest of that day.


When something traumatic happens to you, you go through certain stages.

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

I tell you all of this because I want you to know that getting this diagnosis was traumatic. Because of my particular diagnosis, I had to go through these stages more quickly than others might, but that does not mean that I am truly at acceptance. I have, however, gotten to the point of accepting that I need to tell you the rest of the story.

So, dear readers, here's the rest of the story:

Remember: I said that because of my age, my health, and the fact that I have not had any seizures, the oncology team is confident that I can fight this. 

Bruce Lee preparing to fight.

On June 27th, I found out the name of the tumor that the rockstar neurosurgeon took out of my brain. I found out that this particular type of tumor is incurable. I also found out that it is fightable. 

So when you look at the GoFundMe link, you will read my story, but you will also see pictures that may make you uncomfortable. I know that I don't like to look at them because they are frightening. The fact is that my tumor was a glioblastoma. From now on, we'll refer to it as the G-word, because I don't want to talk about it. It's only been six weeks.

Many of you will be tempted to visit Dr. Google to find more information about the G-word. I will give you the same warning that my oncologists gave me.

Don't. Just don't.

Some of you won't listen. I know you can feel your fingers itching to open a new tab so you can ask Dr. Google about the G-word.

Seriously, don't.

So, here's the thing. Dr. Google is not on my oncology team. My oncology team is very good, very smart, and all of their names have the letters M.D. after them. I am taking medical advice from my oncology team. I am only taking advice from my oncology team. In fact, just like my oncology team recommended, I have not checked Dr. Google about the G-word, and I will not discuss what Dr. Google has to say about the G-word under any circumstances. According to a few people I know who have checked Dr. Google, it was the opposite of helpful.

Bad idea. Shouldn't have done that.

So now that you know the whole truth, here's what I have to say, and it is important:

I know that you all have the best of intentions, and some of you will choose to check Dr. Google about the G-word, but that is your decision. It might make you feel bad, it might make you feel frightened, and it might make you feel upset. Even with your best of intentions, I need you to know that if you bring this negativity to me, I will not be sympathetic. Ultimately, it should not be my job to comfort you about my incurable (but fightable) cancer.

Positivity is so important, and it is proven that positive attitude and strong mental health have an effect on outcomes. I don't want to push anyone away, but I must protect my own mental and spiritual health above all else. Your support and kindness have helped me so much. Please continue to help to protect my mental and spiritual health as I fight for my physical health.


So that's it. That's the whole story.

Deep breath. Here we go: GoFundMe. Even if you cannot donate, you can share it with everyone you know and anyone you don't know!

Cool Haircut and a Clarification

Y'all.

Some of you may have seen my cool new haircut:

First, I want to say, I love this haircut so much. The first time I had this haircut, I was 19 years old. I have had this haircut at least a handful of times in the subsequent almost 20 years. With this haircut, I've been asked if I'm a lesbian (as if a haircut is all it takes). With this haircut, I've been called sir (which is hilarious to me). With this haircut, I've had to buy hats because I forget how warm hair is. With this haircut, I've felt more like me.

I've cut my hair this short for so many reasons: rebellion, needing a change, laziness, a general sense of why not? Mostly, laziness.

When I first posted this picture on FB, I got so many kind words of strength and solidarity, so many likes and loves and people cheering me on and sending good vibes. I never expected to have such strong reactions from so many of my friends and family, and I so appreciate every nice comment and encouraging thing everyone has shared.

But I wanted to clarify something, because this is one of those things that is definitely more than my diagnosis here.

I had short hair in 2006 when I lived in Texas:

 I had short hair when I went skydiving with The Husband in 2010:

I had short hair on this trip to San Diego with The Husband in 2011:

I have had short or shaved hair so many times. Many of you have known me when I've had longer hair, but the truth is that I never feel more myself than when I have very short hair. The first time I met The Husband, I had a shaved head. When I feel like I'm spending too much time fighting my curls, I cut them off.

I've had a love/hate relationship with my hair for as long as I can remember. I have tried to learn to love my hair, but what I have learned is that I love my hair the most when I have the least of it.

I feel most myself when I have very short hair.

This means that, while I greatly appreciate all of the kind words of encouragement, I want you all to know that this Cool Haircut is not actually a Cancer Haircut. It is actually just a haircut because I like my hair short.

It also helps that after the second brain surgery, someone spilled a giant glob of surgical skin glue in my hair, and it was driving me absolutely crazy!