Cancer Update

Yep, still have cancer.

I told you before that I was getting a port. That dealy-bob is in place, and itching like a mofo. I've started the new treatment protocol, which involves a chemo and a non-chemo medicine. The chemo SUUUUUUUUUUUCKS. The non-chemo is kind of okay, I guess, all things considered.

Side effects of all of the above include fatigue (ha!) nausea, and other things I don't want to talk about because of the sheer unpleasantness.

This means I've been sleeping a LOT.

I'm still doing my writing group; keep an eye out, I'll continue to occasionally post my super-cool super-angsty poetry.

Oh, while I'm here, I am pretty sure I've not mentioned this here before: Say hello to the seizures I've had:

They are super mild, and not very frequent. As best we can tell, I've had three in the last four months. I'm not what one might call epileptic, but it turns out that when some Rockstar Neurosurgeon digs around in your brains enough times, the result might be occasional short circuits in your wiring. We told the Rockstar Neurosurgeon about my symptoms, and he said that sounds like it was probably a seizure. I've not had one in the presence of a medical person, so The Husband has been the only one to witness what happens. At this point, it's a best guess diagnosis until it happens in front of someone medical.

Anyway, if it's not one thing, it's another.

I've been struggling with the inspiration for this blog. Maybe next time I'll write about my most recent favorite movie [spoiler: it's Troop Zero].

HOCKEY!!

So, on Saturday night, The Husband and I were lounging around and poking about on Groupon. As a result of this stupid diagnosis, we have not done very much in the past several months, and it used to be that we could pretty regularly find something fun/interesting/unusual to do.

So I found on Groupon a deal for tickets to the Greenville Swamp Rabbits game yesterday. We had no other pressing plans for Sunday, so we went ahead and bought tickets to the game.

Now, I don't know what a swamp rabbit is. I looked it up, and they look like this:

Kinda cute, I guess?

Before I continue, I have to tell you that I LOVE hockey. I grew up watching the Hartford Whalers, and I've never found a team that I love as much as I loved the Whalers. When they ceased to exist, I continued to love hockey, but merely for the sake of the game. We went to the Swamp Rabbits game yesterday afternoon. Honestly, these days when I get a chance to see a hockey game, I'm excited, but I really don't care who wins. I am the screaming fan who cheers for whoever and boos the opposing team, but it doesn't really matter to me who wins. When it comes to hockey, I'm just there for a good time: pretzels, cotton candy, whooping and hollering like a fool. But still, when the Swamp Rabbits scored a tying goal with 4.2 seconds left in the 3rd period, I screamed so hard I might actually have left my tonsils behind! Unfortunately, they didn't pull it through in overtime, losing to the Florida Everblades* 5-4.

Go Swamp Rabbits!

Incidentally, in looking up info about the Hartford Whalers, it turns out that they are now the Carolina Hurricanes. It looks like I have a new team to be partial to!

Ok, so hockey.

I love hockey, but more importantly, I love The Husband for agreeing at the very last minute to take me to some random-ass hockey game for a team we had never heard of and a creature that was a mystery to us. We got surprisingly good seats, and as an experienced hockey spectator who also gets cold really easily because of the giant hairless spot on my head, I knew that I had to bundle up and wear layers.

I love that guy!

There we are having a grand old time cheering on the ridiculous Swamp Rabbits. Seriously, it's the most (good) excitement I've had all year!** We had such a good time at the game, and I cheered so hard that today I'm alternating hot tea and ice-cold water to soothe my poor throat.

As soon as the game was over and we were sitting in the car waiting to get out of the parking garage, we went back on Groupon and got tickets for another game soon!

The Husband really is the best.

Cheers to a life more extraordinary!

*What a stupid name. #SorryNotSorry
**I'm sorry, I had to crack the joke while the year is still young!

Books: The Power of Myth by Joseph Campbell with Bill Moyers (Part 3)

I am still working on The Power of Myth, and today, I want to talk about a concept with which I've always been fascinated: beauty. Before I get to that, remember that last time, I talked about learning from our imperfections, and I examined the cycle of death and life and death again.

I've written term papers about beauty versus ugliness, and thought at length about the ramifications of the conventional Western beauty standard. This diagnosis of mine has changed me in so many ways, including in the way that I think about beauty. I've mentioned before that I don't consider myself to be vain, and I've discussed my hair at length. I still don't consider myself overly vain, but I will say that the way I think about beauty has changed a bit.

In the before, I used to consider beauty primarily in regards to the physical: people, faces, bodies. I found beauty in the written word, the shape of trees, the melody of my favorite songs. It simply hadn't occurred to me to deliberately consider the intangible beauty that can be found elsewhere.


Campbell discusses art and beauty.

"When a spider makes a beautiful web, the beauty comes out of the spider's nature. It's instinctive beauty. How much of the beauty of our own lives is about the beauty of being alive? How much of it is conscious and intentional" (Campbell and Moyers 100)?

In the world outside of us, there is so much beauty, and in the worlds within us, there lies beauty as well. There is beauty in reconnecting with old friends, even when the cause of this reconnecting is so very ugly. There is also beauty in meeting new friends, becoming part of a community through shared adversity.

I've felt such ugliness. When I was first diagnosed, I did not feel any beauty in being alive. I was devastated that this extraordinary life of mine had turned out to be so ugly. I tried to deny the truth of this diagnosis. I simply couldn't imagine living in a world where this was my reality.

My anger was all-encompassing.

I hated the world and everything in it. It was ugly, and I couldn't bear to be a part of a world that harbored this ugliness inside of me. I could find no beauty in being alive.

You have to understand, even when the emergency room doctor told me that there was a mass on my brain, I never once considered cancer. Even the word is ugly.

As time has passed, and I've had the unfortunate opportunity to become accustomed to this ugliness, I'm finding that there is a small but quiet change happening within me.

I still feel the ugliness inside of me. I am still angry.

Yet I have discovered some beauty. Not in my hair, and not in the bags under my eyes, but in the kindness and compassion of my friends, in the generosity of my family, the love of The Husband. Sometimes I have to remind myself that it is not always so ugly. There is that ugliness inside of me, but there is also a nugget of something not quite so ugly hiding out in there.

Hair Today, Gone Tomorrow!

Guess what time it is...

That's right, it's time for another hair post!

So, my hair has been... interesting.

Most people think that the hair falls out because of the chemo. What they might not understand is that in my case, the hair loss is from radiation, not chemo. The radiation beamed its science into my brain, but it also burned me pretty badly. It led to a 'do that was less than ideal, and although I don't consider myself particularly vain, I also don't prefer being stared at.

See, at the final stage of radiation, they do what is called a "power up, cone down" for treatment. What that means is that while, for the first five weeks they beamed radiation over a larger area of my brain, but at a lower dose. During "power up, cone down" treatment, they tighten that beam so it is hitting a much smaller area of my brain, but with a higher dose.

I tell you all of this so I can show you this:

Essentially, I got the equivalent of a severe sunburn to my head. Now, as someone who has only ever had one sunburn ever, I had no idea how painful and irritating this would be. If you look at that area right by my ear, you can even see blisters.

No fun, right?

And then it started peeling.

So, when the peeling was finally over, I was left with an almost perfectly smooth side of my head. It looked not terrible from this angle, but it was an unholy mess of unevenness from every other angle. Also, because the peeling skin also took out hair follicles, I am going to bet that I might be half-bald for quite a while, or maybe forever; who knows?!

I found myself feeling self-conscious because my hair kept reminding me that I'm cancer lady. I don't like being cancer lady. As a shy introvert, I tend to make decisions based on what will bring the lowest amount of attention, so I went back to this 'do:

You've seen this haircut before, and for the time being, it will probably stay like this. Unfortunately, it's the wrong time of year to be rocking a haircut like this, but it's a good thing I like hats!

The little things add up to the ugly side.

I thought that finishing chemo and radiation meant that the hard part was over.

I was wrong.

Since finishing, I've had more time on my hands than I care to think about. Being idle is bad, but being unmotivated is worse. The fatigue hit me pretty hard, too, so all in all it has been a rough couple of weeks.

I'm not technically allowed to drink on the medication that I am on. I wish I could.

Nobody ever said that cancer was supposed to be fun, but this waiting period, where I don't know what exactly I'm waiting for, is especially unbearable. I don't even know what phase 2 of treatment looks like. I might find out next week. Or I might not.

My head itches. The last week of radiation left visible burns on my head. While I would hardly argue that I'm the queen of vanity, I will say that catching people staring at my head makes me feel weird in a way I never expected. The skin started peeling off of the burn, so that is a little extra itchy and unpleasant.

Small things are leading to panic attacks that I thought I had under control. I was wrong.

The body is a fickle thing. I am out of shape and still in recovery from some pretty traumatic stuff, right? Yet walking outside in the heat leads to me getting shortness of breath, which then scares me, which leads to panic attacks.

I'm thirsty like I've never had water before in my life. I still mostly just want things that are cold. But I also get cold easily, so all I want is to be cocooned in a blanket all day with a super ice-cold drink by my side.

I don't want to leave my house.

My hair is still falling out.

I'm in a constant bad mood.

The Husband is doing the best he can with me, but I will be the first to admit that I've not been an easy patient lately. I just don't want to do anything, decide anything, think anything. And I'm tired of listening to myself complain.

I didn't expect this part to be so hard.

By the numbers, again

In the last 127 days, I have been seen by a medical professional and/or hospitalized or treated with radiation 83 times.

I've completed 30 rounds of radiation.

I've taken 42 chemo pills.

I have felt like barfing 42 times.

I have actually barfed 0 times!

Yes!

I've lost or cut off 87% of my hair.

I have missed or forgotten to send 56% of the thank you notes that I intended to send.

I have cried somewhere between 18 and 97 times.

I have laughed so hard it made my brainhole hurt 37 times.

I have had at least 13 but not more than 130 panic attacks.

*Some of these numbers may be best estimates: I teach English, not math, and I've had brain surgery! What's your excuse?

Cancerversary: 3 months since Diagnosis Day

So. three months ago today was Diagnosis Day. I found out that I have glioblastoma, an incurable brain cancer.

In the last three months, I've had surgery to clean an infection, been hospitalized twice, completed six weeks of chemo and radiation, dealt with some truly terrible nausea, discovered allergies to two different antibiotics, and found out enough of the pathology of my particular tumor to know that things will be difficult in the future.

In the last three months, The Husband has taken me to the beach thanks to a generous donation from his very kind coworkers, taken me to the mountains thanks to a discount from Hotels.com that we did not expect, even though I slept the whole time we were there, bought me any food that I might tolerate, taken me to a comedy show, and been my rock, my angel, my foundation through all of this hell. Seriously. I love that guy.

In the last three months, I've lost hair, I've lost weight, and I've lost patience with myself and with others. I don't think I've lost my temper, but I've come close.

In the last three months, I have cried like my soul was being ripped out of me one strand at a time. I have laughed so hard it made my surgery scar hurt. I have ranted and raved, vented, and yelled. I've had meltdowns, breakdowns, hysterics, panic attacks, and everything in between.

In the last three months, I've thought long and hard about who I am. About what makes me me. I've thought about what it means to be a friend, a sister, a daughter, a wife. I've thought about relationships that surprise you and relationships that plug along exactly as expected. I've thought about expectations of myself, of The Husband, of those people I choose to allow around me. I've thought about the value in keeping some and the value of letting some go. I've thought deeply about the value in putting up some boundaries.

In the last three months, I've rekindled relationships with a surprising number of people. As a pessimist by nature, I've never really had high expectations, but what I've found is that people will surprise you every time.

I've thought about my limits, physical, mental, emotional, spiritual. I've reached those limits. I've disappointed myself. I've made myself proud. Sometimes on the same day.

In the last three months, I've discovered that stubbornness and spite will take you a long way, but it won't always take you the whole way.

In the last three months, I've fought to be more than this diagnosis.

In the last three months, I've experienced loneliness and overwhelming support. I've struggled to keep my spirits up, and I've done pretty well, all things considered.

In the last three months, I've sworn at almost every single healthcare provider I've seen (I don't like needles, and no, it's not the same as getting a tattoo).

In the last three months, I've realized that no matter how hard I try to be more than my diagnosis, this thing in my brain will always be there. It doesn't make me who I am, but it is a fundamental part of who I will be. Cancer changes you.

In the last three months, I've learned the hard way that cancer changes everything.

The Good News and Bad News about my tumor

Now more than ever, I need my family and friends to avoid Dr. Google. Remember, I am only taking medical advice from my oncology team, okay?

I'll start at the bad news: The Mayo Clinic found that I do NOT have the gene mutations that make this type of cancer easier to fight. The first one is the IDH1 mutation, which means that the tumor started as something else, and then became glioblastoma. In my case, it's been the g-word all along, so this will be much harder to fight. The other gene is an MGMT silencing mutation. The fact that I do not have that means that I metabolize the chemo too quickly, meaning the chemo is less effective on me than on the people with this mutation. This means that my fight is going to be significantly harder.

The good(ish) news: About 2 weeks ago, they had to do a mid-treatment MRI (which they don't usually do) because I had developed a mild hand tremor in my right hand (unexpected because surgery was on right hemisphere). They wanted to rule out seizure activity and more importantly that the tumor had not crossed from the right hemisphere to the left (unusual but also unusually BAD). So, the MRI ruled out both (good news) but also showed that where the tumor lesion was 12mm at the beginning of treatment, it was now at 6mm, so radiation was objectively making the tumor lesion smaller. Good news, right?

What they let slip (and I did not know beforehand) is that radiation is typically only effective on this type of tumor 20% of the time. Lucky me, I'm part of that 20% where radiation works, since all the genetic news came back not great.

But if I'm being really honest, I'm not really sure I would have gone through the radiation HELL if I had known there was only a 20% chance of it working. Radiation SUUUUUUUUUUUUUUUCKS, and 1 in 5 chance of success is not great. Now, it has been successful so far (next scan in two weeks) but I feel weird about all of it, because if I had known some of these numbers, I might have made different choices that would have ended up with me in a worse position.

So, now more than ever, I need your help:

GoFundMe 
If you can't donate, please share this across any social media platforms. More than ever, this needs to go viral. Thank you so much for your help and support!

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. Keep in mind, GoFundMe takes a percentage of the donations in processing fees, while CashApp will give me 100% of whatever is donated.

A good friend of mine has started a FB fundraiser. If you prefer to donate there, any help would make a difference. Maybe we can make it go viral?

If you are in Connecticut, there will be a benefit event very kindly being held on my behalf at Sudor Taino Gym on October 24th. Any donations there will also be very helpful!

Unexpected side effects of ending chemo and radiation

It has been five days since I finished chemo and radiation. Some unexpected and not quite pleasant side effects of finishing this poison:

• I slept 20 out of 24 hours for the first three days, and only slightly less than that in subsequent days.
• My appetite is basically non-existent. I eat because I have to, but mostly, I'm forcing myself to eat and being mad about it. Food sucks.
• I am thirsty like I've never had water before in my life. Yesterday I drank easily four or five liters of water or juice, and my thirst is never quenched. The Husband says my body is trying to flush out those poisons I've been ingesting for the past 6 weeks. 
• Also, I only want things that are cold. Tons of ice in my drink, cold foods, smoothies, etc. If you know me, you know that it's weird that I want ice because I almost never want that much ice. Lately, it's been so bad that I've been eating ice. Rather, letting it melt in my mouth. 
• I am cranky in a way that I didn't expect after finishing treatment. I thought I would be happy. I thought I would feel accomplished. I thought I would feel some kind of something good. Instead, I feel annoyed because this f*cking diagnosis is hanging over my head while I wait to find out if the treatment worked. The thing is, I still have two and a half weeks of waiting, and I don't feel good about that right now.
• My hair is continuing to fall out on both sides of my head. Not that I'm looking for a wig to fix this mess, but those little hairs are itchy!
• The last week of radiation was the "power-up" period, where they focused the beam (?) more tightly on one spot on my head. What that means is that I have visible burning on the skin on that side of my head, to the point that it caused blisters. The healing process is itchy, and my headskin looks weird.
• I probably mentioned this before, but I am so tired. There is nothing that I want to do or see or eat. I basically just want to sleep forever. I know that is not necessarily the best, but for now, that's where I'm at.

And just like that, my energy is gone. Time for yet another nap?

Still not a Cancer Cut

So guess what.

I cut my hair again!

I'm so cool, my air buds have wires!

Now, don't get too sad. This is not a cancer haircut, this is a shorter cooler haircut! Wanna know why I cut my hair shorter?

Look at this mess:

Call me Patches McGee!

The radiation oncologist told me that my hair would fall out in patches from the radiation. He wasn't kidding. Check this out:

This side is getting radiation. You can see my brainhole!

All the hair fell out on this side. The incision and brainhole are both pretty visible.

The other side was pretty patchy, and it all went gray because apparently brain surgery ages you? But I realized I could do a cool trick. I looked at The Husband and said, "Guess what I can do." He looked over at me (he should have known better) and I grabbed a clump of hair on the non-radiation side and it came out in a clump.

I thought it was funny!

He was less amused.

To be very clear: This is still NOT a cancer cut. This is because I was literally pulling my hair out because I thought it was amusing, and the only way to get me to quit was to shave it short enough that I can't grab on.

The first time my hair started falling out, I had some feelings that I didn't expect. This time, I also had feelings that I didn't expect, but they were different. It didn't feel like a reminder of my diagnosis. It felt like a bad joke, a prank played on me by radiation that was only supposed to affect "patchy" sides of my head, but then the patches got bigger, and the clumps just kept coming out (with my help, admittedly). But for some reason, I felt like it was funny. I laughed at the absurdity of my stupid hair, with which I've had a hate/hate relationship for as long as I can remember, and now my hair is all like:

Okay, I'm out.

I mean, this is so silly. So, please, do not feel sad for me. Don't feel pity for me. Honestly, this haircut is just as cool as the previous one, plus, it gives me an excuse to wear hats that some of you have so kindly sent me!

Hats are cool!

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.

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!