Tough week

Okay, so a LOT has happened in the last week.

Last week I had a good day in the hammock.

Two days after that, I had a couple of bad days that had my oncology concerned enough that they had me come in for labs and blood work. Turns out my results were bad enough that I needed a transfusion of one unit of blood last week. Then, a few days later, I woke up with the taste of blood in my throat. Evidently, a side effect of one of my meds can be bloody nose. But the thing was, it wasn't just a bloody nose.

It was a gusher.

When I say gusher, I do in fact mean that when The Husband saw it, we both knew immediately it was an emergency. We called the overnight on-call oncologist, who said in no uncertain terms that it was time to go to the ER right now.

The nearest hospital is almost thirty minutes away, and my nose gushed like a fountain the entire ride there. Luckily, there was nobody else there, so they saw me right away. Also, do you know how much more frightening the ER is when The Husband is not allowed in? Eventually, it stopped on its own, so I was able to go home (at 4 am). They did more blood work before letting me go, and said I would probably need another transfusion within a day or so. So we left messages for my oncology team to get my chart and notes sent over right away. First thing the next morning, my team got me in for more blood tests, and then scheduled my transfusion for the next morning. It would be a 6+hour process. Again, The Husband was not allowed in with me.

I don't know if any of you have ever needed a transfusion, but it is an exhausting process. I don't know why, but I can tell you that I basically slept for three days. Every time I closed my eyes for 5 minutes, I slept for 6 hours. Then I'd wake up hungry, then I'd close my eyes, and another 6 hours gone to dreamworld.

And suddenly, this morning, I woke up.

Alert.

Motivated.

Feeling almost strong. I guess it takes a few days to assimilate other people's blood? I don't know, but after having what might have been the worst week I've had in a long time, I suddenly feel kind of okay.

Knock on wood.

Sometimes It IS the little things

There comes a point in time where quarantine makes you crazy.

Now, being generally introverted and a loner helps, and I actually like spending time with The husband who is also generally introverted and a loner so it's all good, right?

BUT.

We can only sit and stare at these four walls for so long. The walls are great, but remember, I started my own quarantine when last flu season started. October-ish?

That is a really long time to be stuck in the house.

So, this morning, I woke up like a light switch went off in my head. Back in the before, The Husband and I were avid campers. I can't exactly go camping in my current condition, but we sure as hell could string up our hammocks by the lake and just enjoy a morning of social distancing and changing the scenery.

So I put The Husband to work stringing up both of our hammocks. I usually do my own, but he very kindly took care of it so that I could save some energy. (He's so nice to me!)

With the exception of occasional walks, I've spent almost no time outside, which is tough because we used to camp and hike just about every summer, just to be outside. I don't like bugs crawling on me, but I really like being outside.

I digress.

So this is a lake near where we live.

And these are my feet in the hammock next to the lake near where we live. Beautiful view and very quiet and relaxing. I brought a notebook with every intention of writing a letter, or a poem, or maybe a story or something.

Instead, my feet stayed right there and I dozed off for a while. I woke up when my belly started grumbling, so we cleared up, grabbed lunch, and went home. All in all, I'd argue it was one of the best quarantine days we've had in a while.

Cancer update!

Still have cancer! Got a recent scan, results are stable-ish. Stable enough that there is no need to panic at this point. The cancer is just doing what it does, so we adjust the pills as needed, and re-scan in a couple of months to see what's happening in there.

Really, at this point, MRIs are almost boring. I fall asleep in there every single time, so if nothing else, I know I can squeeze in a nap for the day.

So, the good news is that today, I actually AM more than my diagnosis. The cancer is not the most important or exciting thing about me. I have my writing, my awesome cancer friends (I never expected to be able to say that!), and somehow, even with stupid coronapocalypse quarantine, I'm managing to stay reasonably busy considering I almost never leave the house besides treatments and bloodwork.

Is that it? I think that's it.

Reminder, kids, cancer still sucks!

Spoon Theory and being an Introvert

The other day, I forgot for just a little while, to keep track of my spoons. If you are not familiar with Spoon Theory, I strongly recommend you click through the link here. It's not very long, and it may explain quite a lot if you know or are close with someone dealing with chronic illness. Go ahead. Click the link and do some reading.

Okay, ready? Let's talk about spoons.

Before all of this, I was aware of spoon theory, but I was oh so lucky. I didn't actually have to keep that close a count on my spoons.

It's really quite incredible how brain surgery, radiation, chemo, and all the rest steal your spoons before you even know what happened. This damn spoon thief -- just wow.

Some mornings, I wake up, slowly, sluggishly, and I can just tell that putting my feet on the floor is going to cost me. And some mornings, I wake up feeling full of inspiration and energy, feeling like maybe the spoon thief forgot to get me while I was asleep, and I start with three extra spoons for no particular reason. When I wake up with those glorious extra spoons, I have to take advantage when I can, because who even knows when that will happen again.

So, the thing is, cancer fatigue is a real pain, because side effects of cancer, brain surgery, chemo, radiation, and all those pills also make it hard to predict just how quickly those spoons will slip through my fingers.

The simple act of writing my blog is absolutely exhausting and costs me more spoons than I care to admit. Writing a blog post might take me 30 minutes or it might take me three hours, and I have no way of knowing before I get started. By the time I'm finished and ready to post, I need to eat a snack, grab something to drink, and take a nap. Spoon count doesn't matter at that point: it takes brain power that is not in full supply to get these words out of my head. I love to write. I love to write so much, but at this point, writing feels like an athletic activity, most of the time. I am just always so tired.

While we are here, let's talk about being an introvert. There are conflicting theories out there about whether introversion or extroversion are really a real thing, but let me explain. Introversion does not mean being shy. It does not mean being quiet. Simply, introversion means that it costs energy (spoons) to be around certain people in social situations (parties I guess, what else did we do before quarantine?). For extroverts, they feel recharged being around people, so they gain spoons by being social around most people. For me, most social situations cost me spoons. That doesn't mean that I don't like and/or want to spend time with my friends, but I have to watch that spoon count.

So the other day, I talked with a couple of good friends on Zoom. After that I got to Skype with my oldest friend. By the time I finished talking with these friends about whom I care very deeply I was so tired and done that I proceeded to take a four hour nap. I only woke up because I was hungry, The Husband very kindly cooked a delicious dinner for me, but I still basically wasn't worth a damn the rest of the day. That was the reminder I didn't know I know I needed that it's not just about the spoons, but also keeping track of over-planning stuff for myself. I always feel so guilty for not keeping up with people, or having to cancel or bow out of my online social life, but I am just always so tired. So yeah, if you call or text me at any time of day or night, there is a solid 95% chance I'm just asleep. Gotta hoard those spoons.

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!

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.