just tired

I am just so tired. I don't want to acknowledge the bags under my eyes. I don't want to tell you how much sleep I'm getting, and how that's not enough. The new chemo is kicking my butt in ways I don't even want to discuss. 

I smile because I feel like I have to. Put on the strong face, and never let them see you cry. 

I'm just so tired 

Original poem: Ode to Langston Hughes

Harlem - By Langston Hughes

What happens to a dream deferred?

      Does it dry up

      like a raisin in the sun?

      Or fester like a sore—

      And then run?

      Does it stink like rotten meat?

      Or crust and sugar over—

      like a syrupy sweet?

      Maybe it just sags

      like a heavy load.

      Or does it explode?

My poem:

Ode to Langston Hughes’ “Harlem”

I have a dream

I’m sorry, chemo brain gave me the wrong black history guy

I want to scream

The weight of his words

Falling from the sky

Flittering like birds

Ideas stuck inside of me

My brain is running dry

Can cancer make you not love me?

We carry this shared weight

You and me, and we, and I

Hope seems like cruel bait

The future is a trap

Time just keeps going by

There’s only so much around which my mind can wrap

Langston Hughes infects my memories

Of literature classes gone by

Will my students remember me?

Langston Hughes knew what to do with the words

With the right words, we can fly

I have a dream of being a bird

-         25 March 2020

ImPORTant news

So, cancer update.

I still have cancer. Go figure.

Let's go in order:

• first I had a headache
• then it was a mass
• then I had surgery #1
• Diagnosis Day was the absolute worst
• Then I started phase 1 of standard treatment, but there was a problem

I had an infection, and needed surgery #2 to clean it out.

Back to the list:

• I started round 1 of chemo and radiation
• I finished round 1 of chemo and radiation
• I had a brain scan
• I started round 2 of chemo, phase 2 of standard treatment
• I had another brain scan

Chemo wasn't working, I needed surgery #3. Back to the list again:

• I had another brain scan
• My awesome oncologist decided I need to start phase 3 of standard treatment, which involves both chemo and a non-chemo medicine
• The non-chemo medicine is an infusion, which means that I need a port, which means that tomorrow is surgery #4. 

That's it. I think? That's a lot. Anyway, don't be mad you just found out today, because I just found out today that I'm having that surgery tomorrow. I guess that gives me less time to freak out. Not too happy that The Husband will have to wait in the parking lot, but it's an outpatient procedure, so he'll bring me home tomorrow afternoon, and hopefully I'll be doped to the gills.

Cancer sucks.

Original Poem: The Caregiver's Promise

My writing group had the following prompt a few weeks ago. Here is the poem I wrote.

The Caregiver's Promise
Courage, dear heart

be brave, my love
I know that we will shatter and crumble
but we will figure out what we are made of

Patience, dear heart
let me take the weight of this
I will hold you together
we have a diagnosis, but it doesn't have to consume all of our bliss

Peace, dear heart
sleep, knowing you are safe in my arms
cry if you need to
nestle into me, share my warmth

Courage, dear heart
sob, weep, wail, and moan
I know you fear being a burden
but you will never be alone

- 18 March 2020

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?

Fave Quote of the Book: Slaughterhouse-Five

Slaughterhouse-Five by Kurt Vonnegut

Amazon describes it like this:

Slaughterhouse-Five, an American classic, is one of the world’s great antiwar books. Centering on the infamous firebombing of Dresden, Billy Pilgrim’s odyssey through time reflects the mythic journey of our own fractured lives as we search for meaning in what we fear most.

One of my favorite bits:
The narrator reads a book by a doctor who write horror novels. In that book, the narrator reads, "No art is possible without a dance with death" (Vonnegut 21).

I am no doctor, and I am too much of a scaredy-cat to write or read horror novels, but this one sentence really spoke to me. Seeing as how I have cancer, and have had three brain surgeries in the last nine months, I'd argue that I've danced with death, at least a little, here and there. I'd also argue that some of my best writing has come about after my diagnosis, if I may be so bold as to toot my own horn here.

My diagnosis has made me even more cognizant of my own mortality, but beyond that, I've realized that I have so much left to say. The words pile up inside of me, as I write this blog, letters and cards to my loved ones (SNAIL MAIL!), in my own journal, the book that I'm writing. I have so many words, and even when I'm exhausted from the terrible insomnia, and even when I'm goldfishing, I've stories and poems and memories to share. I write and I write, and eventually, I sleep, and I read, and I write. If for nothing else, this has been a blessing for inspiring me to put ass to chair and hands on the keyboard, and I write and I write.

So it goes.

A Love Letter to The Husband

As a note, I've joined a creative writing group. I have found myself inspired to write short pieces, poems, unstructured stream of consciousness pieces, highly-structured sonnets. I wrote this piece a couple of weeks ago, and I thought that today would be a nice day to share it.

The prompt for this piece was an image of a hand.

Untitled #1
my husband, my caregiver
strong hands, strong heart
protecting me with every fiber of his soul
holding me up when I am too weak to stand
dosing out my meds into my old-people-pill-box
my head hurts - the incision aches
his strong hands carefully clean the wound
mindfully protecting me from infection
those hands that I've memorized for twenty years
I know the story behind every scar, every blemish
those hands with their flaws embrace my own flaws
wiping away my tears, holding me close
I know that I could not be here if
I didn't have his strong hands, strong heart
holding the pieces of me together

Fave Quote of the Book: One Hundred Years of Solitude by Gabriel Garcia Marquez

One Hundred Years of Solitude by Gabriel Garcia Marquez

Amazon link:

One of the twentieth century's enduring works, One Hundred Years of Solitude is a widely beloved and acclaimed novel known throughout the world and the ultimate achievement in a Nobel Prize-winning career.

The novel tells the story of the rise and fall of the mythical town of Macondo through the history of the Buendía family. Rich and brilliant, it is a chronicle of life, death, and the tragicomedy of humankind. In the beautiful, ridiculous, and tawdry story of the Buendía family, one sees all of humanity, just as in the history, myths, growth, and decay of Macondo, one sees all of Latin America.

Love and lust, war and revolution, riches and poverty, youth and senility, the variety of life, the endlessness of death, the search for peace and truth -- these universal themes dominate the novel. Alternately reverential and comical, One Hundred Years of Solitude weaves the political, personal, and spiritual to bring a new consciousness to storytelling. Translated into dozens of languages, this stunning work is no less than an account of the history of the human race.

I've read this book before, and only recently finished it. I don't know if I struggled with it because my brains have been poked and prodded, or because my memory sucks, or because this is just a tough book, but it takes place over the course of a literal hundred years, and many of the characters have the same names across generations. Aureliano Buendía and the 17 (literally 17) other Aurelianos over the years made this book a challenge for me this time around, but even though I found it challenging, I loved it. Gabriel García Marquez is the king of magical realism, and he gives the reader no chance to figure out which way is up before someone inexplicably floats away, someone else goes blind and nobody notices, and for no discernible reason, it rains for more than four years.

The version I read was translated by Gregory Rabassa, and he did an incredible job of keeping the lyrical prose and the poetry embedded in the plot with chapters that enveloped me in beautiful words and sentences like a warm blanket.

My favorite quote from this book, when a group of men are traveling through a dense jungle:

"The men on the expedition felt overwhelmed by their most ancient memories in that paradise of dampness and silence, going back to before original sin . . . For a week, almost without speaking, they went ahead like sleepwalkers through a universe of grief" (Garcia Marquez 11).

A universe of grief. My God, how beautiful is that?

I imagine the all-encompassing silence in this dense jungle. I remember the days after my diagnosis. After the sobbing, after the hysterics, the panic and fear. The stillness in the house. I felt like I was silently drowning in my sorrow. Shattered to pieces, scattered all over the floor. Days merged into nights, and still I cried until I was all dried up inside.

The men in this chapter are overwhelmed by ancient memories, and I was overwhelmed with ancient traumas from my youth rising to the surface unexpectedly. Old hurts mixed with the new, perhaps as a reminder we are made of all the pieces of our pasts, whether we like it or not. They say that the present is a gift, but if I may be so crude, sometimes, it is a shitty gift, the kind where you paste on a fake smile and hope nobody notices the disappointment in your eyes.

This universe of grief still overwhelms me. I mourn the many things I have lost, from the piece of bone in my skull to the ability to actively engage in large groups of people without debilitating anxiety. I grieve for all of these lost things, but none of that grief can be expressed as beautifully as GGM did. Read this book. It is beautiful and it is weird, and it is worth every page.

No Visitors Allowed

Ok, good news first: No, I do not have coronavirus, and I am not ill (besides the cancer, but y'know...). I am practicing a lot of social distancing and self-quarantine.

There are a variety of infographics, diagrams, and charts out there that explain in detail what social distancing means, so I won't go into that in a whole lot of detail.

Instead, I want to address the many people who have discussed or requested a visit with me.

The thing is, because I have cancer, I am immunocompromised. I am not as immunocompromised as I was during daily chemo/radiation, but my body is still spending time fighting the cancer, which means that my immune system is not fully equipped to fight off additional illness.

Last week, I had a follow up with the Rockstar Neurosurgeon to get the stitches out. He likes the way the incision is healing, but it is not completely healed yet.

We had a discussion about corona while The Husband and I were in the Rockstar Neurosurgeon's office. He broke it down for us. Individually, the chances of any one person catching corona are low-ish, but the nature of this illness is that eventually, it is a matter of when, not if, some individual will be exposed.

He recommends caution, and I'm all for that, which is part of why I rarely leave the house, and never leave without a mask and hand sanitizer available. We've been avoiding crowds and basically keeping distance from people. No hugs, no handshakes, no one closer than 6-10 feet during conversation.

I miss having the chance to socialize with friends, but the scary reality is that the Rockstar Neurosurgeon very clearly advised me that if I get this virus, I will end up on a ventilator, just by nature of being immunocompromised. In the past nine months, I've been hospitalized four times. I don't know if you know this, but being stuck in the hospital suuuuuuuuucks. The absolute last thing I want is to be back in a hospital any time soon. A Twitter friend posted this the other day, and I think it's important to share it as widely as possible:

Not sure who needs to hear this, but I haven’t survived almost a year with #Glioblastoma only to die from #COVID19. Stay home, folks. Protect the vulnerable. #btsm

— Aaron (@amhoov) March 11, 2020

Lots of people tell me how strong I am, which is very sweet and very kind, but I have a literal hole in my skull. I am part of "the vulnerable".

I have a close friend who lives in the Midwest-ish(?) who was going to try to come visit me. As we were keeping a close eye on this situation, we quickly realized that although we haven't seen each other in maybe 5 or 6 years, out of an abundance of caution, infection was not a risk we were willing to take, for either of us but especially for me. Her trip was canceled, she is still at home, and we are sad that we didn't get to see each other; however, so far I have managed to maintain my health, such as it is.

Making these difficult decisions is the opposite of fun, but we have to be realistic. We have to understand the risks. Don't panic, you probably have enough toilet paper, and you don't need hand sanitizer in your own house if you actually wash your hands with hot water and soap for at least 20-30 seconds. It doesn't even have to be anti-bacterial soap, considering it's a virus.

Anyway. For the time being, I have a stock answer for those who want to come visit.

If you absolutely must be in contact with me, write me a letter. I really do prefer pen pals more than text, email, etc. Send me a card. Write a quick note. Do you know how much it lifts my spirits to get mail that isn't hospital bills??

PO Box 203
La France, SC 29656

In the meantime, be safe, wash your hands, and cover your cough. You may be generally healthy and strong, but remember, not all of us are so lucky. Protect the vulnerable, the elderly, those of us at higher-risk. It's the right thing to do.

Happy Birthday, Mr. Adams!

Today is Douglas Adams' birthday!

You may or may not remember, but The Hitchhiker's Guide to the Galaxy is my favorite book.

When I am feeling sad, or unsettled, lost, or just not right, I can pick up this book and open it to literally any page and start reading. It doesn't matter where I end up, it's always a good part of the story.

I am very pleased to say that recently, The Husband started reading this book. Now, bear in mind, this book, which is very important to me, is almost 800 pages long. I know that The Husband must like me at least a little, because it is quite a commitment to read someone else's favorite 800-page book. Meanwhile, every few nights, I glance over at his kindle and read over his shoulder for a few minutes. I can't say if he will love this book as much as I do, but I can say that it makes me feel even more loved that he is reading this special story for me. The occasional snicker I hear while he is reading fills my heart with even more love for this book AND this man.

I've had some people posit to me that this book is not actually very well-written. I ignore those people. Yes, I do teach Composition and occasionally Literature at the community college, but that doesn't mean that I am restricted to only reading capital-L Literature. I don't care if this book is not Literature. This story fills my heart, and any opportunity I have to share it brings more love and laughter to my life.

Dearest Husband of mine, I only hope that as you continue working your way through this monster of a book, that you continue having fun with it. That's really the point, right?

So, that's it. I bow my heavily-scarred head to you, Mr. Adams, and thank you for all of the joy, past, present, and future, your story has brought to my life. Happy birthday!