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!

Self care: not just about bubble baths and mani/pedis

It seems that many people equate self-care with treating or spoiling yourself. Buy yourself something pretty. Spend two hours in a hot (lukewarm) bubble bath. Paint your toenails.

Listen, I'm all about treating yourself, but just like I have a thing about being unashamed about mental health stuff, I have a thing about self-care not always being fun. The other day, for me, self-care looked like a too-short nap that left me cranky, taking medicines that I didn't want to take even though I knew it was for my own good, and going to physical therapy even though I didn't particularly feel like it. For me, sometimes self-care means venting because I feel whiny (luckily The Husband doesn't just leave me on the side of the road lol).

Self-care doesn't have to mean look on the bright side and ignore the bad stuff. Sometimes self-care means today sucks, let's try again tomorrow for something better. We can try to be positive all we want, but when things go sideways, we can't just pretend like it didn't happen. We have to be allowed to acknowledge the stuff that is no good. That doesn't make us bad. Sometimes self-care means you understand that timing matters. Now is not the time to have this conversation. Tomorrow I might be in a better emotional headspace to talk about that conversation. If I am not ready for it, I'm not. That has to be okay, right?

Today, self-care meant eating breakfast, writing some mail, and taking a walk because I was sore from physical therapy yesterday. It also means that I need to hydrate because that short walk made me sweaty.

Okay, take your Prozac, get some therapy, be kind to yourselves. Give yourselves grace, and be more forgiving of each other, but remember, nobody is going to look after your mental health for you. Take care of yourself. That's self-care.

That's all I got for now.

Physical therapy

Some of you may be wondering why I'm suddenly complaining about physical therapy, so I want to tell you a story.

Just about a month ago, while hanging out with my baby sunflowers in the garden, I leaned over the makeshift fence The Husband made to protect those baby sunflowers. I was so proud of those little babies, they were so cute. All of a sudden, my balance went funny, and even though I had a hand on the fence, I sloooooow motion tumbled, knocking over the fence and somehow pirouetting so I landed on my rear instead of my head. I knew I was falling, I said, "Oh noooo I'm falling," and The Husband grabbed for me but gravity had already taken over at that point.

I ended up on my rear sitting on some poor baby sunflowers, embarrassed and feeling stupid, with what we thought was nothing more than a bruised ego.

Well, that's what we thought. Within a few hours, The Husband noticed that my coordination was off. I was bumping into things. Losing my balance. I didn't think it was that bad, but he was worried about it.

Incidentally, when you have brain cancer and go to the oncologist's office, they will ALWAYS ask you, "Have you had any recent falls?"

So, when The Husband saw that I was physically affected almost immediately after what I thought was a tiny little embarrassing nothing tumble, we decided to call the doc rather than waiting weeks for my next follow up. They had me in an MRI by that Monday to see what was going on in there. They found a couple of things: I had some brain swelling (which appears to have been helped by the additional prescription medicine they added to my ever-growing stack of pills I take every day) and there was a tumor that was not responding as they would have preferred to the chemo regimen I was on at the time.

Time to change to IV chemo, put in a port, and try something new again. So, I'm only a couple weeks into the new chemo regimen -  too early to tell what's happening in there.

But, the lasting result of the fall jiggling and rattling my tumor has left me with occasional weakness, loss of balance, and other unpleasantness.

I've had to start using a cane for safety, because I truly never know what days will be good and unremarkable, and other days I can barely support my own self on my left leg. When I noticed that the weakness and loss of balance (normal for the location of the tumor) were starting to affect me more and more, I asked for a physical therapy referral, which I just recently started. Now, I was the one that asked for it, because I knew that I needed it, but fun fact: physical therapy is not actually fun. My physical therapist is very kind and very patient with me so far, but physical therapy is much harder than I thought it would be. I have a long road ahead of me to recover the balance and strength that I lost in that one stupid little fall.

So there you have it: I use a cane now. My sunflowers survived my squishing them and are only a little bit shorter than their friends, and I'm doing physical therapy because if I don't, I'll only continue to feel the physical deficit caused by the fall.

Have we mentioned that cancer sucks?

Inspired and motivated and random thoughts

Today I feel inspired and motivated. I've been reading and resting and hanging out with my niece who came to visit. But today, I woke up ready to write a real chapter of my book. No time to waste, need to get these words out of my head and onto the screen.

I have joined a few communities recently, including the writing group which I know I have mentioned. I've made some really amazing cancer friends (online, of course *thanks quarantine*). I've been learning from my co-conspirators in this terrible club we are all members of, and I've been able to take better care of my mental health this way. Before, I thought I was too fragile and too afraid to have cancer friends. But even with all the different stages and types of cancer, we are all sharing valuable experiences, even if they are often incredibly unpleasant.

Let's talk mental health. From the beginning, I knew I would need help. If you have a cold, you take Dayquil, right? There's no shame in taking some medicine to stop the flow of boogies and constant sneezing. You might even pop some extra vitamin C to hopefully prevent the flu or some sinus infection from taking you out. I know enough about myself to know that I am predisposed to depression and anxiety, so from the beginning, I knew I would need chemical help to make it through all of this. I'm not ashamed to say that I am on anti-depressants and anti-anxiety pills and even birth control pills to keep my brain chemistry and hormones evened out and relatively balanced.

So when this all started, I got into regular talk therapy and also tried music therapy. Neither of these was quite the right fit for me. That doesn't mean that therapy doesn't work, but for me, I needed something different.

The wild thing that I truly never expected was my cancer writing group to be more beneficial for my overall mental health and stability than so-called real therapy would be. I've always been a reader, and I've always written when my feelings overwhelmed me; somehow I never realized the connection between the emotion and the release/acceptance of how I was feeling.

Anyway, if you just wanted a regular cancer update: still have it, chemo sucks, blah. Good times.

Original poem, and a commentary on quarantine

discarded mask

disgusted by the disposable nature of safety

one year ago I would not have needed the muzzle

keeping me in

keeping you out

stifled by hot breath

disgusted by myself

why is it I have to burp every time I put on the mask?

disappointed in protesters who disrespect my condition for their "constitutional rights"

Freedom to kill me

dissolves my Freedom to be

I long for before

1 impatiently wait for after

unable to mask my disgust at the unmasked-

so afraid of every cough, every sneeze.

- 21 May 2020

I wrote this for my writing group a few weeks ago, and I want to talk about this coronapocalypse. Now, I know that people are stir crazy, fighting cabin fever, and trying to figure out how not to dropkick their kids out the window.

The thing is I've been essentially on lock-down, self-quarantining since flu season started. I go out every once in a while with The Husband, with my reusable washable mask, and tons of hand sanitizer. Our trips out are quick and purpose-driven, and involve very little in the way of meandering. Since I've been essentially in isolation since December (I think?), I've become very uncomfortable being in public. People cough, sneeze, and breathe on all kinds of things that I don't even want to think about. So essentially I stay in my house.

On top of all of that, I just recently started anOTHER new chemo protocol. Plus my wonderful oncology team has so kindly added even more pills to take every day.

I've got uppers, downers, anti-inflammatory pills, antacids, the whole lot. This new treatment protocol is HARD. Not to get into too much whiny detail, but sometimes it feels like drowning under the weight of it all. I've been trying to keep up with people as much as I have the time and energy to do so, but y'all, I am tired. There is nothing interesting happening, and because I am even more immunocompromised than before, I really just don't trust going out in the public. If one flu virus or strep germ gets to me, it could be incredibly dangerous.

So, that being said, I know that I've been pretty radio silent for a while. I know there is a whole apocalypse happening out there in the world. My silence doesn't mean I don't notice what is happening out there. My silence means that I have my actual literal brain as my top priority right now. That is all I can focus on at the moment, and you know what, I have actual literal brain cancer. I think this focus is fair.

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.

Fave Quote of the Book: Small Victories by Anne Lamott (Part 2)

From Amazon:

So, where did we leave off? (LINK)

Was I saying that I came from an unhappy family?

What does it mean to have a happy family?

Who knew that I'd be exploring such difficult questions in a silly little blog that is supposed to be about non-cancer. Yet, here we are.

My family is special. I remember a childhood of laughter, silliness, bad jokes, talking lobsters, and spontaneous trips to unexpected locales.

I also remember a childhood with tears, fear, hurt and misunderstanding, and being misunderstood. As a shy introvert from an exceptionally loud family of extroverts, I spent too much time with my own thoughts, wishing I fit in better. I had feelings I didn't understand, couldn't put words to, and as an early reader who read "at the college level" by the time I was 11, it was unusual to be unable to find the words I needed.

We fought (and still fight). We cried (and still cry). We try to understand each other, even though it often feels like we all came from different planets. Are all families like that? I honestly don't know.

We had love, but we also had an unfair share of unhappiness. Well, I call it unfair, but I don't know if that is true either.

We have hard conversations, hard feelings, and hard hearts, and all the wishing in the world can't undo some of the terrible things we've done, or unsay the terrible things we've said. Lamott says,

"Forgiving people doesn’t necessarily mean you want to meet them for lunch. It means you try to undo the Velcro hook. Lewis Smedes said it best: “To forgive is to set a prisoner free and discover that the prisoner was you.” (Lamott 117).

As family, we should always be prepared to forgive, because we are family, right? Even the Bible says we should turn the other cheek, so forgiveness is the word of the day, yes?

Maybe.

For me, explicit forgiveness is not free. Again we come back to the idea of grace. I am not full of grace, I might be full of something, but grace ain't it. Forgiveness comes at the cost of acknowledging the wrong, committing to never repeat it, and apologizing. An apology involves the words "I am sorry" or "I apologize for the hurt I caused to you."

A non-pology might include the words "I'm sorry if..." or "I'm sorry but..."

"I'm sorry if I hurt your feelings" is NOT an apology. "I'm sorry but I didn't mean it that way" is NOT an apology. I'm sorry for anything that I might have done" is not an apology. It is so difficult to find grace when trust is broken. Trust might be healed if the apology includes a commitment to not repeat the transgression. Trust might be healed if the transgressor takes some action toward healing. Trust might be healed by respecting boundaries.

I am no expert on grace, but I have so many expectations. I love the idea of grace, of love undeserved and without conditions. I want to learn that grace.

My therapist tried to teach me about giving myself grace. Do you want to know what is even harder? Giving grace to others. But as Smedes above said, forgiveness sets us free. Perhaps that is the grace that I am looking for. That doesn't mean that my heart is left open to be trampled by any and all who wish to stomp on it. The doesn't mean that I have no hurts left, because I do. But in my quest for giving myself grace, I have to try to let go of those hurts and move forward. Unconditional love is not the same as unconditional trust, but maybe we can learn to get closer to that, no matter how far away that grace might seem.

Read this book. It is by far one of the best I've stumbled across in a while.

Fave Quote of the Book: Small Victories by Anne Lamott

From Amazon:

Anne Lamott writes about faith, family, and community in essays that are both wise and irreverent. It’s an approach that has become her trademark. Now in Small Victories, Lamott offers a new message of hope that celebrates the triumph of light over the darkness in our lives. Our victories over hardship and pain may seem small, she writes, but they change us—our perceptions, our perspectives, and our lives. Lamott writes of forgiveness, restoration, and transformation, how we can turn toward love even in the most hopeless situations, how we find the joy in getting lost and our amazement in finally being found.

Profound and hilarious, honest and unexpected, the stories in Small Victories are proof that the human spirit is irrepressible.

I first read Anne Lamott in grad school. Her book, Bird by Bird, changed the direction of my education, my career, and my life. Although Lamott and I have some things in common, our belief systems are vastly different, but that's ok. Obviously, I don't know this woman, but from her writing, I get the impression that she is kind, warm, and thoughtful. I'd love to have a meal with her, or buy her a cup of coffee.

Throughout my diagnosis, I've been heavily contemplating the idea of grace. My therapist says I should give myself grace, but I don't always know what that means. She says I should forgive myself, and I don't always know how to do that. I have spent the majority of my life mastering negative self-talk; what is this grace we speak of?

I feel like Lamott understands me, without even knowing me. One of my favorite parts of this book is when she says,

"When you are on the knife’s edge—when nobody knows exactly what is going to happen next, only that it will be worse—you take in today" (Lamott 4). 

I feel that this is my diagnosis, summed up in one sentence. I'm still in a place of intentional ignorance. This diagnosis has taught me to take in today, one day at a time. Like an addict, I don't count too far ahead in the future. I count tomorrow, and the rest come as it may.

Lamott also talks about her family:

"Ours was like any other family, basically well-meaning, with lots of addictions, secrets, and mental illness. We were such a polite catastrophe that everyone’s energy went to survival, self-medication, Mask Making 101, and myopia" (Lamott 161).

Every family has their secrets, right? As Tolstoy said, "All happy families are alike; each unhappy family is unhappy in its own way" (Anna Karenina). While I'm not prepared to share all of our secrets, I will say that Tolstoy had his wisdom.

Am I saying that I came from an unhappy family?

Stay tuned to find out more!

"But you look so strong"

"You look so good!"

"Your color is good," with a grin, "I can't believe how strong you look!"

I don't go out when I don't feel good. 

When you see me, you see me at max a 3 on the pain scale. Keep in mind, as someone who suffered from chronic pain before my diagnosis, a 3 is barely notable. I've taught classes with 3/10 migraines. I've tutored students or graded 50 papers with 3/10 pulled muscle in my less than healthy back. I've hiked up mountains with 3/10 for pain from my plantar's fasciitis.

I can't remember the last time I had a 0/10 day. Recovering from this most recent brain surgery has been a lesson in pain. All day, I hurt. My head. My skin. My joints. Everything. 

I can sleep through 8/10 pain if I take prescription painkillers. I was always so afraid of becoming a statistic, but I can barely function in my own home without warm blankets, a heating pad, and opiates to bring me back away from the higher end of the pain scale. Every day, at some point, without fail, I hit 7 easily. Some days I hit 8 and I don't know what to do with myself besides be angry for not being stronger. Be angry for becoming a statistic with my opiates. Be angry that the pain just. Won't. Stop. 

But it doesn't stop me. The Husband listens to me complain, but I can only let it get me down for so long. I assess my incision site, my joints, my neck. Strong enough for now; may as well take advantage while I can. 

I go out and paste a smile on my face. "You're so strong!"

You don't get to see my tears. My drug induced sleep. My frustration with a body that is not strong enough, not warm enough, not stable enough. My fear of tripping over my dog, falling down in the shower, bumping my head on the cabinets that are exactly the right height for my still tender surgical wounds. 

Before the coronapocalypse, I used to go out for coffee and read a book, comforted with the knowledge that The Husband would take me home as soon as I was ready to go, too tired to be out, feeling too much pain to paste on that fake smile. He would see the moment when my eyes stopped hiding the pain and start looking for an escape. 

3 out of 10 on the pain scale is barely worth a Tylenol. I can do anything at a 3.

You don't get to see me at a 7. The tears at a 10 are my secret. See how strong I am? 

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].