One Year cancerversary

Well, one year ago today, I was diagnosed with brain cancer. I'm still here, still mostly me, minus a few bones and plus a few extra scars. When it comes down to it, I don't want to celebrate this as some special milestone; I just want to say that inertia keeps me going, and as long as I can keep on going, I will keep on going.

As a young kid, I remember taking a special test, and in the 3rd grade I was moved to the Gifted class. I was proud of being a smart kid. I loved to read (still do) but for me, for most of my life, my proudest asset was my intelligence, my logic, my rationality. Life played a dirty trick on me by letting this happen, and it just wasn't fair. I felt betrayed, lost.

I was afraid.

But it wasn't just the cancer, I was afraid of losing myself. I begged my Rockstar Neurosurgeon not to make me stupid. I was so scared to wake up from actual literal brain surgery having forgotten how to read, how to spell, how to write.

Would I even know if that part of me was erased? Who would I be without that part of me? My Rockstar Neurosurgeon is a true Rockstar, and I came out of that first (of multiple) brain surgeries with very little in the way of deficits. My reading speed slowed down, but otherwise I was okay.

Since then I've had radiation beamed directly into my head, three different kinds of chemo, three brain surgeries, countless MRIs, finding more tumors, and the never-ending isolation of Covid quarantine. But after a year of all of this, I am doing okay. As okay as I can be with cancer.

Yeah, I have cancer, but I'm not helpless, and I'm not dying yet. I spent a lot of time thinking about my inevitable mortality, staring at that bus. It took me a long time, but I am finally able to stop thinking about it, at least for days or even weeks at a time. It's not about dying of cancer any more. For now, I choose to mark this milestone by living with cancer. No cakes or parties because I don't want your germs, but I won't say no to a few more penpals, and if you would like to donate I still have that Gofundme, Amazon wish list, Cashapp, stuff like that. Do you know how much it costs to keep up with prescription copays?It's a LOT

My family and friends who have been here for me, thank you for all of your love and support. It means more to us than you could possibly know.

Ok, ready to hear the original poem of the day?

Things they don’t tell you about cancer:

It is lonely

It is frightening

Everything hurts

The chemo isn’t even the worst part

Well, sometimes, it is

There is so much to keep track of

Like a full-time job

Flu season is scary

Covid quarantine is pants-shittingly terrifying

You can’t hug every friend or family member you see

No matter how much a good strong embrace would help

It is too dangerous

Besides

Your skin will hurt

Your stomach will hurt

Even hugging your dog will hurt

there is so much fear

Is this a normal cancer symptom?

When should I worry?

When should I just take a valium and go to sleep?

How to turn off the loop in my head?

Cancer cancer cancer

Cancer cancer cancer

Eat dream and breathe cancer

It erases who you were

A professional

A friend

A sister

A daughter

Instead you become the diagnosis

Cancer cancer cancer

A reader

A writer

A mentor

Cancer cancer cancer

Consuming you

Destroying you

Shredding you to bits

Tearing away all of your softest spots

Leaving you with only the hardest pieces

Cancer cancer cancer

It leaves you with nothing but stone

They don’t tell you that you will have to be stronger than you have ever been

That the scars will harden you

Preparing you for the fight of your literal life

It will be quiet

Whispers and murmured euphemisms

So many prayers and thoughts

Overflowing good vibes and warm fuzzies

They won’t tell you any of these things.

-         11 June 2020

That's my stuff for today. I hope you have a good day. Love you guys!

11 month cancerversary

Well, here we are again. Another month of surviving cancer. Getting ever closer to the big one.

So, I still have cancer (duh). I get a lot of people sending prayers for miracles, positive vibes, so much hope that this incurable cancer will just fix itself. I really appreciate all of the positivity, but it is important to remember that positivity can become toxic, such that the patient is essentially blamed for not being positive enough, at which point, it becomes her fault that she is still without that miracle.

To be clear, I am not saying that I reject positivity, only that I take it with a realistic view of the science, and the primary treatment planning led by one of the best medical oncologists in the region. No Dr. Google. Please do not recommend drugs (legal or otherwise) or CBD oil. I will take the many drugs recommended by my oncological team. I will not try the MJ, because I just don't like it. If my primary oncologist prescribes MJ for me, I'll take it. Doesn't mean I have to like it.

Anyway. after all this time, and all of these surgeries and adjusted treatment plans, I really appreciate all of the support, kindness and love that all of you keep pushing in my direction. For that, you truly are awesome friends and family.

7 month cancerversary

7 months ago I received my diagnosis.

Everything has changed. I have changed.

I don't know what else to say. Happy anniversary?

I don't need or want congratulations. I want to not have cancer.

I cried so many times, until I thought I would drown in my tears.

7 months feels like a lifetime. I've grown older and more self-aware. I've become contemplative. Everything is different, every thought is different, tainted by the reality of cancer.


7 months feels like only a moment, ephemeral and disappearing in the blink of an eye.

Here's to 7 more months!

Books: The Book of Lost Things by John Connolly (Fear of Death)

In this story, David gets pulled into a world not quite like ours, and while traveling this world, he meets various people and creatures, some good, some evil.

One of those people is Roland, a soldier. David is traveling to find the king of this land not quite like ours, and Roland is traveling to find Raphael, his friend and "the blood in [Roland's] veins, the sweat on [his] brow." Without him, Roland says that he is less than he once was, and he fears Raphael may be dead (Connolly 207). David asks Roland if he is afraid of dying in his quest to find Raphael (Connolly 207). Roland responds:

"'I am afraid of the pain of dying . . . I have been wounded before, once so badly that it was feared I would not survive. I can recall the agony of it, and I don't wish to endure it again. But I feared more the death of others. I did not want to lose them, and I worried about them while they were alive. Sometimes, I think that I concerned myself so much with the possibility of their loss that I never truly took pleasure in the fact of their existence'" (Connolly 207).

I have had to think about the so-called bus that could hit me tomorrow, but through this, I have been far more worried about the bus that could hit The Husband next week, that could hit my sisters next month, that could take away those whom I love and cherish. This terrible diagnosis has forced me to contemplate death with far more depth and detail than I would prefer.

The interesting part of this is that the more I think about death, the less afraid I am, for myself. Death is a universal truth. While, hopefully, it is obvious that I am in no rush to meet him, and I would be so pleased if he could pass me by, that is childish fantasy. I don't want to say that I am not afraid, but less afraid as a result of this choice to contemplate him.

Even now, I am far more terrified of losing those whom I love. I am a master worrier, and yes, I can and will worry myself to pieces if I haven't heard from Baby Sister in several days, or if The Husband takes an unusually long time to get home. So I can fully understand Roland's take on death. We are all dying (hopefully slowly). This story speaks to what I think may be a common experience for many of us. The fear of losing someone else hurts far more than the fear of losing myself. At this point, I've come as close as I can to accepting my diagnosis. I don't like it, but it is what it is.

Today is the 6-month cancerversary of my diagnosis. This diagnosis changed my life. I felt so much loss. Like I could no longer keep a grasp on the life most extraordinary I used to have with The Husband. The thing is, after six months, I've figured some stuff out. Yes, we still worry. Those bills won't pay for themselves. The GoFundMe has stalled out and we aren't sure how to get it rolling again. 

I don't remember the last time I cried for myself. I don't know if I need to worry about that. It seems like I am reminded of my condition in different ways. The tremor in my hand. The trouble sleeping. The weird cold flashes (anti-menopause?). The unpredictable appetite. The handful of pills I have to take every day. The constant and never-ending fatigue. The constant and never-ending co-pays.


I worry constantly. But The Husband is there to hold my hand and comfort me. I am lucky to have the opportunity to take pleasure in the fact of his existence, for I know that I could not have made it this far without him.

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.