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].

Identity crisis: Who even am I?

Guess what.

I'm back!

I want to tell you a story about my identity crisis that I had last night that almost broke me. For those of you who don't know, I am Puerto Rican and Dominican, a mix that is quite rare in the area in which I live. Most of the few Hispanic people in my area are Mexican, which means that dialect and food are different enough that I just don't quite fit in. My local grocery store stopped selling anything Goya (the food of my people) a few years ago; the next closest grocery store only occasionally has the Goya goodness that I need.

Now, I am not what you might call a *good* Latina. I am woefully out of practice with my Spanish, which I understand but barely speak anymore. I only rarely cook Hispanic food, and when I do, I have to call my sister to remind me of the recipes that families never write down.

I do, however, use the seasoning of my people, although it is getting harder and harder to find on a local level

  

Anyway, I tell you all of this, because there is one special beverage from my childhood that holds a place near and very dear to my heart. The single only people I've met who like this stuff are either related to me, or of similar descent.

Ladies and gentlemen, nerds and cool kids alike, I present to you:

Evidently, it is an acquired taste. The Husband doesn't like it. To be honest, I don't know many other people who do. But for me, this drink is the epitome of being Latina, and drinking it brings me such comfort of days gone past that I can barely verbalize how much it means to me.

Like I mentioned, the food (and drink) of my people is hard to find. The second closest grocery store carries a generic version which I've not dared to try, because I grew up only drinking Goya brand, and this is one of those instances where brand loyalty means so much more.

Now, the fifth closest grocery store is about nine miles away from my house. The Husband and I happened to venture over there the other day, because we remembered that this particular grocery store has an actual international section, with options beyond taco kits. This grocery store, carries Goya products!

AND they had Malta!

Y'all. It was the last six pack, on the bottom of the shelf, and I felt myself pulled to it like a magnet in my heart was telling me exactly where to look. The heavens opened up, and I heard the angels sing. Finally, I could have some Malta!

Well, before I tell you anything else, I need to tell you a very important fact about brain surgery, chemo, and radiation. Any or all of the above have the ability to change your palate. Things that you used to like might taste disgusting to you, and things that were repulsive might be just the worst. For example, before all of this happened, although I only rarely drank alcohol, when I did, it was either liquor or wine.

Imagine my (and The Husband's) surprise when one day I decided I wanted a beer.

I don't like beer. 

I've never liked beer.

Even in college, I preferred cheap vodka over beer any day of the week.

Why did I suddenly crave beer? Keep in mind, I can't drink a whole beer, especially with the various medications I'm on, but a sip here or there wouldn't kill me, right? So The Husband had a bottle of Yuengling, and I grabbed the bottle and took a sip, and the beerness and tangy delicious flavor of this beer soothed my bitter soul in the most unexpected way.

I don't like beer. But this beer calls to me. I can drink maybe a third of a bottle before I start to worry about medical interactions, so I'm not a full-on beer drinker yet; however, The Husband now has to deal with Wife tax on his beer (a couple of sips from an ice cold bottle) then I'll leave him be.

Okay, so now you have the background information. The key point is that, although I suddenly like beer (seriously, it's weird), I never thought my palate had changed that much.

Remember that Malta?

Yesterday, I was waiting for dinner to be ready when I decided to crack one open before we ate. I took a biiiiig swig.

I gagged.

My dearest friends, who am I if a swallow of Malta makes me gag? Did the Rockstar Neurosurgeon scoop out the Latina part of my brain?

Maybe I should try another couple of swallows.

Nope. No good. It tasted chocolatey and rancid in all the wrong ways, and I was pretty sure that I was going to vomit. 

The spirits of my ancestors had abandoned me, left me to rot in a Malta-less hell where I didn't know who I was anymore.

So, I dumped out the rest of the bottle and tried not to cry.

The husband could see the distress in my face, and I wanted to lay down on the floor and cry.

Remember how I said it was the last pack on the bottom shelf?

I just remembered that, and took a look at the bottle I had just dumped.

Expiration date - wait for it - July TWO THOUSAND SIXTEEN.

Yeah. For real. The bottle had 07/16 printed on it.

It was not that the Rockstar Neurosurgeon had scooped out the Latina part of my brain, it was that my palate can't handle FOUR-YEAR-OLD Malta!

Whoo! Needless to say, that was roller coaster ride of emotions.

I don't know how I'm going to find non-four-year-old Malta, but my already shaky identity is now slightly more solid. 

Can Malta be mailed?

Let's talk tea!

I used to hate tea. I thought it tasted like nothing more than dirt water. There was a time where I would rather die of thirst than drink nasty old tea. It was gross!

I was a coffee girl. I like my coffee like I like my men: strong and sweet! Cappuccino, macchiato, hot, cold, frappe, latte, any and all of the above.

Seriously, look at this sexy beast!

The thing about coffee is that these days my stomach can only handle one at a time. Since The Husband is at work, it is hardly worth it to make a pot of which I will only drink one. Also, I'm lazy.

Keurig and those types of systems are not for me. They are wasteful (all those pods) and they are not worth the price per cup. Also, the coffee just isn't very good. Yes, I am a coffee snob. I like Starbucks*. I think Dunkin burns their beans; their coffee is bitter in an unpleasant way. QT is good (and affordable)**.

Anyway. I digress.

So. Tea. Dirt water.

A few weeks ago, whatever week it was that we had winter for like four days here in South Carolina before summer came back with 60-70 degree weather, I decided that I was going to find a tea and I was going to like it.

The Husband (look at that face up there 😍) indulged my nonsense, and we went to the grocery store to buy a couple of boxes of tea. Keep in mind, we bought two boxes of tea even though I didn't (at that time) like tea.

Well, evidently, I made some good choices for once. It took a little trial and error, and the advice of a friend and feedback from a sister to refine my tea-making skills, but I am happy to report that I have somehow, in less (fewer?) than a couple of weeks, learned to love tea!

And this AWESOME mug was a gift from The Husband!

Turns out vanilla chai is delicious, and inspiring. Some of my best writing lately has been on vanilla chai.

Chamomile is amazing. Having something warm to drink before bed helps get me into the right cozy sleepy mood.

* This should be read as: I like to sit and just hang out at Starbucks while drinking their decent coffee.
** But not the best place to hang out...

Cancer update: Things that have been happening.

I've spent so much time thinking about other things that I realized that I haven't really had any cancer updates lately. So here it goes.

I am at the boring stage of cancer. Of course, there's the vomiting, the dehydration, the fatigue. There's the feeling like I have ADHD because my attention span has significantly decreased. There's the multiple naps I take every day because the body is working hard to repair all I've been through. There's the change in medications and the change in appetite.

None of this particularly interesting to me. I'm sure there are some who might worry that I am wasting away on my deathbed, but the majority of the time, I am just napping on the couch.

I'm still not driving because my eyesight still hasn't returned to normal (which Rockstar Neurosurgeon said could take several months). I'm in my house almost all day unless someone wants to come pick me up to go somewhere while The Husband is at work. Honestly, though, since it is finally starting to get chilly, I am perfectly content cocooning up in a blanket in my house.

So, during the day, I write, or nap. Play with the dog. Read from my book. The Husband comes home from work and we figure out the dinner situation. We empty the trash and wash the dishes.

Remember back when I said that cancer was boring?

It still is.

More of the Ugly side of this Diagnosis

Through this entire ordeal, I have tried to look on the bright side of things.

Yesterday, the only bright side was at the bottom of the toilet bowl.

I started the six months of chemo, and suddenly, I was barfing over and over and over and over again. I hurled nine times within three hours. The same medication that I have been taking suddenly made me a puke machine.

I talked to my doctor (Reminder: Don't be Dr. Google!).

Evidently, this is not unusual when moving to this round of treatment, but they did want me to go to the cancer center for infusions. They pumped me full of fluids and anti-nausea medicine and sent me on my way. Nobody was worried, which was a good thing, because that helped me relax just a little in a very stressful situation.

This means, though, that I need to adjust how/when I take my meds, when/what I eat, and when I sleep so that I can figure out what my new normal will be.

My therapist once told me that she hates the term "the new normal." I have to say that I agree with her. Things are constantly in flux, swirling in the chaos that is life. We may become accustomed to one form of this chaos, but one thing is always for certain (especially with this diagnosis): Don't get too accustomed, because things are always just on the brink of change. We all have to be prepared for that, because the change may be positive, like a cool new haircut or it may be negative, like hurling for three hours in the middle of the night.

Historically, I've tried to be brutally open about my journey with glioblastoma. I have tried so hard to be more than just my diagnosis, but simultaneously, I have tried to explore and explain my journey, in the hopes that perhaps this voyage can be just a little less difficult or frightening for anyone who might be sailing through these stormy seas.

Full disclosure, though: I have NOT been 100% open about my journey.

You have seen my First Face. That's the easy one.

I have worked really hard to show you as much as possible of my Second Face. This is really challenging, because I am not accustomed to opening myself up to the vulnerability involved in being so exposed, especially when things get ugly.

The reason I have not been 100% open about my journey is because my Third Face needs the time to process information, to make decisions, to determine what kind of access my Second and First Face have to my innermost feelings that make me who I am. My Third Face is mine. This means that although I have been chronicling this journey, this does not mean that any individual person has a right to see my Third Face (or even my Second).

This journey is incredibly difficult, moreso than I let on much of the time. I try so hard to inject my own inappropriate and morbid sense of humor to this little piece of hell, because if I can't laugh at or mock my cancer, what can I do? But please remember, my Third Face is mine.

So there you have it. Opening up my Second Face is very difficult. But I think that it is important that people who see my First Face understand that, although I might make light of the situation, my Second Face is showing you that this is hard. Harder than you know.

How can you help?

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?

The Problem of Food

This evening, I went into full meltdown mode.

The trigger:

Food.

This oral chemo that I'm taking is supposed to be very tolerable, but it still makes me feel like I've got gremlins running around my stomach and I feel thisclose to barfing pretty much every day.

Today, the nausea was exceptionally gross, so the only thing I wanted was something extremely cold, so I had a smoothie.

This evening, The Husband, being such a good husband, asked me if there was anything in particular that I wanted to eat for dinner, and honestly, all I wanted to do was barf.

I didn't barf, but I did lay down in the bed and cry for a little while. There is so much nausea in my life, and my favorite to do before all of this was eat interesting, spicy, fatty, delicious food.

Chicken tikka masala

Plaintains in any form

Macarons (especially strawberry, raspberry, or pistachio)

Anything guava-flavored

Chinese food

Now,  very few foods are interesting or delicious, no matter how spicy or fatty they might be. I eat because I have to eat, but I rarely enjoy eating anymore, and that is just sad. Now, food is just another reminder that I am sick, and I almost never want to think about food anymore.

My new favorite foods are Slurpees or smoothies. Things that are ice cold.

Slurpee

So, the moral of the story is that the unexpected emotional breakdown of the day would be because food sucks and I basically don't like any of it anymore. If I'm being honest (and I am!) this is just another ugly side of this stupid diagnosis. I hate this part.

Now I have to go eat so I can take my night medications.

So many meds...