not so awesome news

Short update-I got some news today to update, I am still processing this information I've mentioned before that I am in a wheelchair/walker but,I am no longer able to use the walker. the paralysis has progressed to the point that I have a1most no sensation left in my left arm or my left han dor my left leg. This makes it unreasonable. to propel myself in a wheelchair let alone hold myself up in a walker when I have no feeling. no strength no sensation in my left arm So I need an electric wheelchair for my one functional hand. I met with my Rockstar Neurosurgeon. My tumor is essentially inoperable if he goes in after it I will NOT wake up. I don't need second opinions from Drs Google and remember it is not my responsibility to comfort you if you feel sad that this thing is growing in my skull.

I asked the Rockstar NueuroSurgeon if it appeared possible 1 would walk again?

With the location and size of my tumor it is inoperable and any deficits from which I suffer are likely permanent

 

hair update

The hair situation. 

Long term Mohawk I kept it for as long as I could but it started to hurt my scalp. 

Suddenly I discovered I could do magic! Look what I could do!  Hair today. Gone tomorrow! My hair started coming out in clumps which no surprise there. I just thought it was hilarious.  I'm on chemo,so there was no surprise . Simply put I am too lazy to deal with the curl monster that emerges from my head so, only one thing to be done: 

wheels and a walker

Well hello again after all these weeks. 

I walked into the hospital using a cane. I came out needing a wheelchair. What I never expected was to be released handicapped fully unable to walk. And it was a chemo week so I was simply to tired to deal with this mess. So the Husband bought a wheelchair, a walker etc. While I slept, and he dealt with MY INSURANCE CANCELING. My former employer couldn't hold my position anymore, which means I am unemployed, and for a little bit I was uninsured. For those few minutes I was prescribed a medicine that cost several hundred dollars without insurance, and all that medical equipment came out of our pockets. Husband got every thing figured out but we have a new deductible (thousands of dollars higher) with a premium that is almost triple what i had to pay before. This is a bit of a struggle, never mind the fact that I need to become accustomed to being disabled. My legs simply don't work.  I have (had) a dvt, I have continued weakness in the other leg after that fall way back when, so no working legs, so unless I can get an octopus to donate some functioning legs to me i get to hang my out in my wheel chair and walker..i haven't been in the mood to blog. Or do anything. I don't want to leave the house, except on chemo days when I don't have a choice. Moral of the story. Appreciate your functioning legs while you can. 2 years ago I ran a 5k of which I'm so proud and I am just pushing to get my legs back in order to do another one at the end of the year. Man cancer sucks. 

Speak it into reality

Life is too short to forget about goals and the future, right? In these days of the coronapocalypse, it is a little difficult to plan for the future. Do I want to spend a week in the mountains locked away in a cabin in September?

Yes.

Do I want to take an Alaskan cruise in January? 

Yes.

Do I want to go back to Italy next March?

Of course I do. 

But the thing is, the coronapocalypse has ruined any way to plan for the future. When will this pandemic end?

 

So I can't really make plans for after the pandemic, because when will that be?

But I noticed on the Twitterverse that there were some people who were speaking their future into reality. For example, someone (I don't remember who) tweeted that in 3 months they would run a 5k (or something). And then they made it happen!

So, speaking the future into reality. By the end of 2020, I will complete my second 5k. (My first one was pre-cancer, and I ran/jogged the entire thing stopping to walk, in a respectable 32-ish minutes.)

Now, considering the cane, the cancer, and the likely continuing pandemic, I have no delusions of running a 5k in that kind of time; however, even if I have to walk or crawl or use crutches, I will complete a 5k by the end of the year.

And speaking more of the future into reality: is that by the end of the year I will get my writing published. Well, guess what.

I got a second piece published: Schrodinger's Cancer Patient.

I am extremely proud of this piece. And! I am that much closer to meeting my goals!

Published! "Mother's Love"

I've made it my goal to get my work published. I've been working hard compiling and organizing my writing, which includes poetry, prose, and creative non-fiction.

I am so pleased to announce that one of my pieces has been published through Lacuna Loft's blog. I know I've mentioned this organization before, and I will keep on linking and mentioning it as it has become a very important part of my life.

Anyway, I've been submitting my work for a few weeks now, across various platforms, and I am very proud to say that the first piece to be published is a personal essay called Mother's Love.

Please take a look and share with your friends and your family.

Hopefully soon I'll have more published works to share!

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.

Original Creative Piece: Sometimes

Sometimes, there are so many words inside of my head, I feel like I might explode. I have poems, and stories, vivid memories and hazy images, all scrambling to escape.

Sometimes, those words hit my soul.

Ocean.

Water.

Waves.

Salt.

Floating. Adrift. Endless.

Sometimes, I write about the sea

Sometimes, I don't know how to say what I want to say.

Honest? Hurtful? Unfiltered? Blunt? Brutal?

Softened? Eased? Semi-true?

I don't know where my inspiration comes from. My Rockstar Neurosurgeon has been inside my head. Has he met my Muse? Does he know where the ideas hide? Where they develop? How they are born?

Sometimes, the words burn inside of me. An inferno of rage. A conflagration consuming me from deep inside.

Hot.

Hateful.

Unkind.

The worst parts, burned beyond ugliness. Too charred to share.

Sometimes, the thoughts fly out of my head. Too jumbled, bursting forth like starlings flying together and apart as if of one mind. Flying is better than falling. Few things are better than flying. Flying is freedom. Falling is inevitable. Falling is fate, for all of us, eventually.

Sometimes, the words are the most important thing in the world.

Sometimes, they are just words.

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.